Facing the Future

Options
1…6791112…20

Comments

  • pookie61
    pookie61 Member Posts: 257
    edited March 2009

    For a long time I have wanted to donate my body to medical science and will do so if I can find a place to take it.  I was also thinking of this museum exhibit we went to that used a process of plastication to preserve the body so you could see many of the parts.  It was incredible.  At the end they had information on who to contact if you want to donate.  I may look into this also.

    My concern is with my kids.  When I have brought this subject up before my daughter in particular seems not to like the idea.  I guess I will find out what happens after to the body after the school is finished with it.  Perhaps something can be done that will make her feel better and make it possible for me to do what I want.  I also like the idea of not spending a lot of money on a funeral. 

    Finally I have picked out the place where I want my memorial service.  During my lunch hour I often walk at a nearby university that I have had much connection with-2 degrees, worked there, now after 15 years back there and walking.  They have a religious center with beautiful glass walls and lots of flowers.  It sems right to have the service there.  

    I feel like slowly things are coming to together for me.  Now I just need to find a way to talk with my parents and husband.  It feels both good and terrible to be doing this.

    · Share on FacebookShare on Twitter
  • saint
    saint Member Posts: 1,877
    edited March 2009

    This IS the place I call home-base. I feel most connected with you girls. Tho, like any good women's group, we may need a sergeant-at-arms to keep us on task, there will be times we digress & I think it is ok---even GOOD! A little lightness as we walk the dark tunnels of fear.......

    I woke up to the news that my old principal who has been fighting lymphoma died at 2AM.  He was one of the best bosses I ever had. He was a good & faithful servant to God & his fellow man. But mostly he was a godsend to thousands of children in his long career in education. When he was first dx'd we talked about what the "terminal" journey is like. He KNEW his odds weren't good, but he kept on keeping on. He didn't teach us how to die, but how to live!

    My own journey has changed my attitude toward death in recent months. I feel sadness for his family, but I don't feel sad for him! I know he was tired & in pain. He is joyful today! I know he has been deteriorating for weeks/months, but his dying seemed to happen in a matter of days from when the word went out. It brought up a lot of questions for me again-----will we KNOW when it is time? Will we have control over how fast or slow it goes? I believe we will! I think he kept up his battle for his wife & 3 dd's way past the time many would have given up.I think he may have waited for it to be the right time for them before let go......

    My biggest fear is the actual dying part. I KNOW what it feels like to wake up & not be able to breathe--the panic & fear! I do NOT want that for me or my loved ones!! THAT is the scariest part to me. Like analemma, I worry what the actual dying will be like. In the end (literally) all we want is for it to be as peaceful as possible. An unknown process that I will trust Hospice to facillitate...I pray we each have that final peace.....

    Be well & stay strong 

    · Share on FacebookShare on Twitter
  • Analemma
    Analemma Member Posts: 1,622
    edited March 2009

    Oh, it was you, Pookie, who posted the link to the great transcript!

    DH and I have filled out the forms for medical donation.  You can get a list of places that take them by state if you google "body donation" and then your state.  There is one list that is sorted by state, and some have phone numbers.  I knew that I wanted to donate mine to the Cleveland Clinic, so I googled Cleveland Clinic body donation and I was able to get the forms online and then mail them in.  

    I have also considered a green burial, where the body is placed in a bio-degradable coffin or shroud and buried in a natural spot.  You can google green burials or green funerals to find out about that.  Standard burials are one of the most environmentally unfriendly things we can do, with the chemicals used in embalming, metal vaults, and then the constant care of a cemetary.  I know it's the standard way to do things, but it just doesn't appeal to me.  I know that by choosing a medical science donation that they will have to embalm me, but I think in this case it's for the greater good.

    Pookie, they also will cremate the remains after they have used them and return them to your family if they request, or bury them in a designated place.  I'd much rather save the money on the funeral costs and spend it on a party for the living! 

    · Share on FacebookShare on Twitter
  • Seven11
    Seven11 Member Posts: 162
    edited October 2010

    Hi all,

    Not wanting to take up your space or attention, just want to mention that I have read this thread.  I honor each and every one of you and your journies.  I'll be lifting you up in my thoughts.  

     (backing out now!!)

    Katie 

    · Share on FacebookShare on Twitter
  • pookie61
    pookie61 Member Posts: 257
    edited March 2009

    Thanks so much for the information Analemma.  I contacted Baylor College of Medicine here in Houston today, as their website only provided email.  They told me stage 4 breast cancer was ok and that I can donate my eyes to an eye bank here in Houston, which I really want to do.  They will be sending me the forms. 

    Taking this in tiny little baby steps.  Talking about it with family will be the hardest for me. 

    · Share on FacebookShare on Twitter
  • EWB
    EWB Member Posts: 2,927
    edited March 2009

    Holy Moly...just got back from a 10 day trip, was away with dh for quiet time together. What did I miss? I gather some are not happy with stage 4ers/metsters discussing things that are relevant and important to us, but scary to others? what gives, if its a thread for Mets and recurance aren't these things that apply? Let others go some where else if they don't like the conversation. What have I missed/am I missing?

    Why am I suppose to worry about someone else's reaction to my nightmare, they can change the channel/thread. I can't. I am getting so tired of walking on eggshells for others. When is it my turn (our turn) to be scared and frightened and freaked out, without worrying about a stage 1 or 2 getting upset?

    Guess I need to rant a bit, this really ticks me off.

    Hope all are well. See you all tomorrow, bed time for Bonzo 

    · Share on FacebookShare on Twitter
  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited March 2009

    EWB we have already ironed out the misunderstanding.  It was not the metsters that had the problem... it was that non metsters were using the metastatic threads to feel better about their situation (basically they are not us).  One was more pushy and caused some strong emotions which was misconstrued to this thread.   It turns out that this thread is welcomed by everyone.  Metsters can exchange info on what is necessary (paperwork), type of service/burial, special touches - individual letters, gifts, whatever.  But it seems that you needed to vent and that is what this thread is for too.  Welcome.  Vent on.....

    · Share on FacebookShare on Twitter
  • suecco
    suecco Member Posts: 317
    edited March 2009

    Hi

    Just here to vent, Im sure some of you will remember my post on mets thread about my husband and the hidden mobile phone, and that basically I took him back to ease the pressure for my kids over the coming months ( hopefully years! ) Well you guessed it the t*^t has done it again, yes ANOTHER mobile phone, but still the same december girl, well to say I am devastated is an understatement, he has obviously moved out permanently as far as Im concerned but to add to all the feelings going on with that situation.............

    You see now this bit will be a bit controversial if your ready for it...... I never told my kids, not anything.  Crazy I know but this was my way of coping and carrying on as usual (denialdenialdenial!) I have used scalp cooling with all my chemos and kept my hair, so that wasnt an issue, and I basically carried on my life with them as 'normal' although I can say they are far more independant than other teenagers, they can both take care of themselves, earn their own pocket money with saturday jobs, they are amazing individuals whom I am so proud of and who I have protected at all costs.  The right moment never really came, it was always the next tx we will tell them, and it just went on and on like that, and now Im sitting here on my own knowing that now I will have to tell them soon and husband wont be here to comfort and support them, I just feel so guilty to burdon them, its not fair.

    Bear in mind ladies I am having one sh1tty day, I love to hear your diverse opinions, but please be gentle with me!

    Thats it really, just needed to share with you, any suggestions on approach would be welcome, the kids are 15 and 18, and I was dx 7 years ago.

    Sue x

    · Share on FacebookShare on Twitter
  • Fllorik
    Fllorik Member Posts: 1,351
    edited March 2009

    My heart goes out to you. I wish my arms were long enough to cross this big pond and wrap them around you. I know you will find the strength and the right time to tell them. Who knows...they might already know or suspect something!

    · Share on FacebookShare on Twitter
  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited March 2009

    I want to throttle any man who, given a second chance by a forgiving woman, betrays her with some tart who''ll probably dump him in six months. Teenagers, especially ones as exceptional as yours are, are pretty perceptive, and it likely won't come as a complete surprise. Don't take on any guilt - he's the one behaving like a jack-ass and upsetting their world. I know you want so much to protect them and you'll probably have some tears. But it's YOU they care about. Didn't he only marry you less than five years ago? They are loyal to you, the dude can take a flying leap! 

    Big Hugs!  And... Courage!

    Lisa

    · Share on FacebookShare on Twitter
  • pookie61
    pookie61 Member Posts: 257
    edited March 2009

    Sue,

    I know how you feel about telling your kids, I  have two teens 12 and 15 and haven't told them yet about the mets.  My dh wanted to but I wanted to wait and let them live their lives normally as long as possible.  You have been through so much lately with your husband.  If your health will allow it maybe a little while longer would not be so bad.  I'm just wondering why you feel like you need to tell them right now.  Take care.

    · Share on FacebookShare on Twitter
  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited March 2009

    Wow Sue, I really feel for you and your kids.  Thinking that both hubby's heads should be cut off and fed to the pigs.  Hubby obviously is infatuated with December, and you have used your coping techniques to protect the childrens.  I am sure that you will be able to sit down and have a family counsel where you tell them both things and end it with you love them.  You are the constant in their world.  Since they are so mature, and have their heads together, perhaps they will have ideas on how to cope with this.  They may be your pillars of strength.  Good luck... and let us know if we can help in any ANY way.

    · Share on FacebookShare on Twitter
  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited March 2009

    Sue, I am so sorry you are married to an ass-hat. Shame on him. I just can't understand how the human spirit and will can be so weak.

    My boys know I have cancer and that I am fighting it. They have no idea what Stage IV is, or that I could die from it. They are 8.

    When the time is right (sooner rather than later) let them know. They might know. They might have a feeling. I read once that letting our family have hope is a good thing.

    Even though your idiot husband let you down, you raised two wonderul kids. They will be by your side for a long time. We don't know what the future will bring. I am sure they can handle what you tell them. They will need each other during this time and in the future.

    I posted on my carepage, is it better to 'know'  or not to know when it is your time? A friend who lost her parents very quickly (she was age 18, 42 respectively) She told me for the ones we leave behind, it is easier on them if they know. They have time to be with us and let us know how much they love us.

    Give your kids that chance. Just a thought.

    hugs Sue, sorry about your butt -head DH, kick him to the curb and take him to the cleaners.

    Janis

    · Share on FacebookShare on Twitter
  • EWB
    EWB Member Posts: 2,927
    edited March 2009

    Thank you Dream,

    I am still a bit confused. I see that things have been renamed, or rearranged. Trying to find my way around. What is this thread for? Where do metsters/stage 4s go to talk, vent, etc? Are we "allowed" to talk about the dark side of cancer etc?

    Sorry all I seem to be having a hard time figuring this all out...wish I could blame chemo brain, but I have never had the pleasure of chemo (just lots of hormonal therapy). As today has gone on I am feeling more ticked off, frustrated, sarcastic (not in a good way), chip on my shoulder, just waiting for the wrong thing to be said, looking for a fight kind of mood. This is very unusual for me and I don't know where its coming from, my apologies.

    Sue I am so very sorry for all the stuff you have going on! I'm sure your kids will be ok, may even have some idea of whats going on (kids are pretty perceptive). Sounds like 2 really great kids who will be supportive and a source of strength and help for you. Hang in there.

    · Share on FacebookShare on Twitter
  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited March 2009

    The new set up is due to the fact that stage 4 (metsters) were asking for a place where people would not be looking for reassurance that they would not be us one day.  We asked that there be a place where those questions could be asked and we would responsibly provide reassurance.  The stage 4 thread would therefore be a place where we could converse amongst ourselves about stage 4 issues etc.  However, I had already opened my thread about dealing with the dark stuff - the fact that we are dying and need to sometimes yell - IT ISNT FAIR.  And what can we do to make the process less of a hassle for our loved ones.  Do we have religious regulations to follow or do we make up our own thing?  And as you can see it is a place to vent.  So you can go where you want.  But occasionally, we should reassure those that think they may have mets but have not been confirmed.  Someone held our hand, and we should extend ours too.  But those that want to know what we did to get mets.... how they can avoid getting mets.... in other words, how not to be US, go back to the boards and read.... we did NOTHING, we did not ASK for it, and you are HURTING us by even asking that.

    · Share on FacebookShare on Twitter
  • Analemma
    Analemma Member Posts: 1,622
    edited March 2009

    Elaine, a couple of weeks ago there was a dustup on the Mets board, a lot of early stagers were posting there looking for our experience to diagnose their symptoms.  It got a bit ugly for a while.  But what happened, was that some of us who wanted to be able to talk about the scarier issues of terminal cancer (issues surrounding death, mostly) came over to the palliative board to seek some privacy while all the spats were going on on the mets board.  The mets board got renamed "Stage IV" and all the history of threads were kept there.  And a new forum was created, "Worried about mets but not diagnosed yet" as a place for those who, well, were just worried.

    We have been talking about issues regarding death and preparation for it here on the palliative board, and I think that's appropriate.  The Stage IV board is still mostly talking about treatment and personal issues related to the diagnosis, but not specifically about death.

    Brenda

    · Share on FacebookShare on Twitter
  • EWB
    EWB Member Posts: 2,927
    edited March 2009

    Thank you both for the clarification. I am certainly not opposed to helping and holding hands for someone else, someone was there for me. Pay it forward and all, but I also agree that there needs to be a place where I/we don't have to worry about that and have a chance to be open, vocal and concerned about us.

    Thanks again for history and all. Sweet dreams tonight,

    Elaine

    · Share on FacebookShare on Twitter
  • LynnW
    LynnW Member Posts: 191
    edited March 2009

    Sue,, when I read posts like yours it makes me step back and thank the heavens that at least out of all of this hell,, I have a person,, a man,, to be with me when I know that no other man would.  If I could lend you mine for a while i would do it. Just so you have some support  and someone to give you the hugs you need.

    This guy you called your husband is a selfish bast$%*&ard.  Maybe you should have HIM sit down with the children and explain your situation and how he's abandoned you for another broad who has no morals either. Then he can see their faces and reap what he's sewn.  Is he their biological father. ??  I don't assume he is if he can do this to their mom. 

    Your kids are your family and they are the only ones in the world that can understand and help and get you though this.  I think if and when you tell them,, you'll feel a huge weight lifted off your shoulders and you'll feel so much more free.  Their main concern is "you". Just like your main concern is them.  I beleive they will suck it up and focus on helping you. Young people that age are surprisingly mature and could even have discussed things like this with their peers.  Good luck to you girl friend.

    Lynn

    · Share on FacebookShare on Twitter
  • saint
    saint Member Posts: 1,877
    edited March 2009

    Hugs sistas!

    Sue--rage, scream, cry & break something. Then move on to what YOU need....he will get his due in the end & you will not have to sully yourself with the likes of either of them! I am SO angry at your lousy @#$#@#$%^ dh! Like florik, I wish I could reach thru this machine & give you a deep, warm hug.

    As for your kids...don't you think they already suspect BOTH problems? If you need to reassure them about your health simply remind them what your life have been like & what they have witnessed for 7 years & let them know you plan to continue in the same way for as long as possible. Sounds like you can depend on 2 great kids who were raised well!  I have told my kids again & again--"you will be OK!~"

    LynnW-your reply brought tears to my eyes! To share your good man with a sister who is down? Your post reminded me to appreciate that I have a man so committed most ppl only dream of it! Hugs & thanx for the reminder!

    I have had a few pm's from nons who have read here. They are, without exception, understanding & respectful of this thread (hence the pm's rather than posting) One non (is that term rude? I just think it is easier! LOL) has given me something to ponder. We are talking about what we think we would like to leave for our loved ones & how we want to make it easier for them. Would it not be appropriate to open another thread in this forum where ppl who have SURVIVED the loss of a spouse or parent could chime in with THEIR perspective on what they learned about what was/should be left behind? I have always said I'd rather be the one WITH cancer than watch a loved one go thru this---maybe we could gain insight from some of our sisters who have walked this road WITH a loved one they have lost. It might even be cathartic for THEM to offer help after their experiences.......what do you all think?

    I will be away helping give a retreat this weekend--you will all FEEL it when 46 teens pray for you!!!!

    HUGS-be well & stay strong 

    · Share on FacebookShare on Twitter
  • Fllorik
    Fllorik Member Posts: 1,351
    edited March 2009

    Wow 46 teens praying for us! Fantastic!

    · Share on FacebookShare on Twitter
  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited March 2009

    Saint having the perspective of people who have already lost a loved one would be wonderful.  This thread is not to cut off people but simply a place where we can be open.  I dont think we would need another thread.  I feel we should welcome their imput right here.  It is part of the conversation - is it not?

    46 teens all praying.... wow. 

    Analemma your explanation of what was happening was so much better than mine.  Thank you for making the situation clear.

    I have only been able to get on the computer in spurts due to fatigue... it is nice to go to the sites and post a message.  I feel comfortable here.  I dont have to watch what I say and I get to say exactly how I feel.  It is more than I get in real life where I have to watch that I dont say something serious in a joking manner and upset someone or have to be brave because otherwise people panic if Im not 100 percent. 

    I feel hugged.  :)

    · Share on FacebookShare on Twitter
  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited March 2009

    Sorry Sue.... I meant to say something to you too....

    Would a social worker or someone on the hospital staff help you explain to your kids.  They can give the positive and help them with what to look for and how they can help.  I think that your kids will step up to the plate... too bad the weakest link already left the team.... but if you are worth more than what he has to offer.  And so are your kids.  The social worker may help there too.

    If not a medical person, do you have a good friend who could soften the words and give them hope.... you have survived 7 years.... they must know that there is something.... and they may think up worse things - their imaginations could be going wild - it may be a relief to put a name to their monster.

    If you need a friend I am here, along with all the others here.  I hope you feel hugged.  :)

    · Share on FacebookShare on Twitter
  • pookie61
    pookie61 Member Posts: 257
    edited March 2009

    Hope things are going better for you Sue.   I found people's responses about what to tell your children interesting.  I don't disagree that our kids should be told.  But I have mixed feelings about my kids providing me with any kind of emotional support.    Eventually they will have to help out in terms of household maintenance and driving, especially my older son.  Because of my situation, when my health degrades to the point that I can't keep up with the day to day stuff that is when their childhood will most likely end.  There probably should come a time when we will cry together, athough I want that to be later rather than sooner.

    I just got through reading part of a section of a book called motherless daughters.  Very hard to read,  The author's mother died of breast cancer, and she describes some incidents where she was called upon to provide emotional support for her mother.  Granted, these incidents were unplanned and worse because the author did not find out about her mother's illness until relatively late, but nonetheless she was not prepared and somewhat traumatized by what happened. 

    I am still working this through myself.  For me the decisions about what to tell my kids and when are probably some of the most important ones I have ever made.  Even if they sense something is wrong, and I know my kids do, they do not sense the magnitude of the issue.  I also worry about them running to the internet to consult Dr. Google as soon as they find out.

    Take care.

    · Share on FacebookShare on Twitter
  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited March 2009

    I have an almost 20 yr old daughter living at home.  She knows everything about my situation.  She does provide me with emotional support.  Once she took me to the ER because she was the only one to do so.  She visited everyday.  My room-mate needed something very personal picked up at the drug store and she offered to do it.  Now she is often moody and grumpy about household chores but when I need her, she is there for me.  I could have taken the course of not telling her but she is smart enough to know the vibes in the household are off kilter. 

    My 24 yr old daughter lives in the building and provides very little.  I have to aske her to do something and she has to be in the mood to be helpful.  I get very little support from her.  She has her own problems and I know she cannot make me the #1 worry in her life right now.

    My 3, going on 4 grandson, knows nothing.  He comes in and plays.  After dinner, grandma takes him to the bathroom to wash hands and brush teeth.  He offers no emotional support.  But he does distract me for periods of time.  And forgetting you have breast cancer for half an hour or more is precious.

    · Share on FacebookShare on Twitter
  • saint
    saint Member Posts: 1,877
    edited March 2009

    Hugs all!

    My kids know what they need to about my mets--I have always told them the truth & given them as many facts as I felt were age appropriate at the time. But then....I have ALWAYS been pragmatic & matter of fact about many things other families whisper about...my family had too many secrets!

    Anyway, I don't see kids picking up more household chores or more responsibility as a bad thing. I always think back to other times when families stood together against all kinds of odds & everyone stepped up to the plate. I believe our society has gotten soft in the time of so much luxury & after working in the schools I pray the new economy issues will have SOME good results--if only to take us back to a simpler time when we didn't have so many THINGS & actually spent time together--sorry-----this rant was NOT meant to negate anyone else's style of parenting or need to shelter their kids----God knows I have sheltered mine, too!

    As for suggestions from those who have experienced loss of a loved one---I will start a new thread! It is a commonly held respect on the boards that this is a sacred thread & I want ppl to feel they are invited & not intruding on this one---again---no offfense intended...we may have to just agree to disagree...

    With that I depart for my weekend retreat---hopefully NOT opening a huge can of worms in my wake! LOL HUGS

    Be well & stay strong 

    · Share on FacebookShare on Twitter
  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited March 2009

    I think it really depends on the age of your children and support. I would hesitate for the emotional support. My mom tried to get that from me when my dad left her. I was in my late 30's.  It was extremely hard for me.

    However, when she had BC (she is a 18 year survivor) I didn't really understand how to support her. I did go to the hospital, doctor appointments and so forth. I did the best I could.

    My kids are young. All I need from them is hugs and I DO expect them to do more for themselves. I even screamed at them once (guilt is a wonderful thing sometimes) that they needed to help out more. I was having trouble walking before my hip surgery and they were being typical self-centered 8 year old boys.

    I do try to make their life normal. But this is the life we were dealt as a family. They will hopefuly grow into compassionate men with the experiences they had early in life. That is what it is all about anyway isn't it?

    My support network is here and my friends. I am blessed with 3 wonderful women who pick me up.

    Janis

    · Share on FacebookShare on Twitter
  • ranD
    ranD Member Posts: 373
    edited March 2009

    Sigh, woke up again in the middle of the night and had that sinking feeling that I will never be back to normal.  I hate waking up my husband to talk to , but I just get hit with this overwhelming sadness and with the breathing issues I have, it magnifies itself.  I start to wonder if my last moments will be gaspign for air...I know morbid.  When daylight comes I always feel that I am going to kick this, its just nights that are hard.

    i haven;t started my letters to the kids yet, I keep thinking that i will know when the time is right...you know, cancer just plain sucks!!!lol

    randie

    · Share on FacebookShare on Twitter
  • ranD
    ranD Member Posts: 373
    edited March 2009

    Janis, just reminded of something my doc told me.  They did a study of why docs go to med school and found out that a majority of them during the ages of 6-10 were faced with a serious medical issue in their family.  They later chose medicine, so maybe we are all raising the next group of compassionate doctors that will cur this disease that will be taking so much from them..just a thought, randie

    · Share on FacebookShare on Twitter
  • saint
    saint Member Posts: 1,877
    edited March 2009

    Janis & randie-----YEP! As much as we wish we didn't "bring this down on our family" it's not like we CHOSE it! In the end, it isn't the hand you are dealt but how you play it! Hopefully we are raising kids with so much experience that no hand dealt will ever defeat them!

    HUGS 

    · Share on FacebookShare on Twitter
  • suecco
    suecco Member Posts: 317
    edited March 2009

    Hi Saint, your so right! We have a generation of compassionate, independant and feisty kids coming through our ranks!

    · Share on FacebookShare on Twitter

Categories