How about a thread for people not recently diagnosed?

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. 

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

Jojo61 said:

Not sure if I qualify in this group

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

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

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

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

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

 

I 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

Footstomper said:

Working

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!

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 said:

Footstomper
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

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 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.

 

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

Footstomper said:

Who is this masked man?

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.

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 said:

Do you know how kids treat subs?

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.

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

todd121 said:

You qualify

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

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

Jojo61 said:

Stomps/Peter

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

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

APny said:

I don’t belong in this thread

I don’t belong in this thread but I just wanted to say that you’re all my heroes and inspiration for courage, determination, strength and compassion for others. You’re never far from my thoughts and I’m grateful that you’re willing to share your expertise and knowledge. Unfortunately with this horrible disease, today’s stage 1 can be tomorrow’s stage 4. Having you share your experiences is invaluable not only to others in the same situation but also to those of us who simply can’t know what the future holds but at least, thanks to you, will be prepared with knowledge to face whatever should happen. Bless you all!

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