Facing the Future

Well said EWB     My  new phrase.  I don't have the luxury.

Thanks so much for starting this post.  At my live support group I feel like most of the women don't want to talk about the hard issues.  The financial and practical issues are one thing.   I am very worried about making sure that my husband understands I want hospice sooner rather than later, that I probably can't die at home because he is totally blind and who will take care of me?  I don't want my kids to do it.

 But the other pressing issue for me is dealing with the fear of the dying process and then actually dying.  What kind of debilitating physical issues might I have to deal with before I die?  Will I be able to handle it from a psychological standpoint.  How will I keep from losing it.  I have already lost part of my voice and my left eye doesn't open properly anymore.  

I am not really religious either.  Our rabbi says that God gives does not make bad things happen nor will God make them go away, but that your faith can give you strength and get you through.  I pray that I have the strength to make it through this. I hope no one gets offended, but if it wasn't for needing to collect life insurance, I am not sure what my end of life decisions would be.

Hugs to all. 

Saint,

Since I'm the one who made the editing comment, I wanted to clarify a little bit. I don't mind if my family/friends read about what was going through my mind, how I felt, etc. but there is one particular person who is very close to me that I just REALLY need to talk about sometimes. There are times when I'd like advice and input about dealing with that person, but I worry about leaving questions that I won't be around to answer.

 Pookie,

About the dying process...I have lots of questions about that too. Have you noticed that in books and movies when someone has cancer, they just go on living their lives as usual until a week or two before they die? I can't tell you the number of Lifetime Network and Hallmark films I've watched  where the supposed cancer patient is just fine with a full head of hair until they finally succomb--always remaining completely lucid (and unbelievably profound) until their final moments. I have a link somewhere to a hospice site that gives the "straight poop", but have avoided reading through the whole site. (BTW, if anybody wants that link, I'll be glad to look it up and post it).  Anyway, my worry about the process, aside from the usual concerns about pain and loss of dignity (diapers, etcl) is not having all my mental faculties under control. When I was in the hospital with mets fractures, I was pumped full of pain meds. I can remember lying there and hearing someone talking and realizing it was me. There was like a total disconnect between my thoughts and the things that were coming out of my mouth. I didn't say anything extremely hurtful or horrible then (that I know of--I have partial amnesia of that hospital stay as well), but I did say things that felt like they just spontaneously fell from my mouth without any thought or instigation on my part. I worry that I might end up hurting my kids if the drugs cause that sort of thing to happen during the dying process. There's no real way to prepare for that other than refusing drugs and I certainly don't want to do that. I guess you don't hear many people talk about someone having said horrible things to them as they were dying....but does that mean it didn't happen or they just don't want to talk about it?

I am so glad you started this thread!

(((HUGS)))
Diane

Florik,

Family plot is the gravesites at the cemetery. A group of them together. Our cemetery asks that if possible you place the plots in more than one name ..such as ours are in my name and my daughter's. They are completely transferrable. I actually already transferred one so I know it can be done. Hugs, Mazy

That was my post about the movie 2 Weeks.  It is good movie, it touched on alot real emotions...I admit, some scenes were a little off beat, like the Rabi shouting "You will be fine" to the woman on her deathbed, I guess they tried to put a bit of a comic twist on things.

I set up a meeting at home to see about setting up home care for my mother not too long ago, in preparation for myself heading home for a week at spring break.  The meeting was going great until the case worker starting pulling out pamphlets about Community Palliative Care, aka hospice.  Thats when I noticed mom getting annoyed...she told the guy to just leave the information and thanks for sharing.  I haven't looked at them yet, but I know they about proxy's and health care directives. I found a website, canadian virtual hospice  and book-marked it.  When the time comes, I will arm myself with the information I need.  At least I now know that we have "hospice" in Canada, I was a bit concerned about that.  I'm not even sure if mom wants to die at home or the hospital?  Never thought of that until now, I just assumed she would be at home.  One thing that I know for a fact, is that her passing will be pain free, I can guarantee, no doctors in their right mind would stop pain meds.  I silently hope, that when the time comes, mom will just drift off into a peaceful sleep.

Returning to a point that I think we've all made....re non metsers posting on the mets board. Since we're all a bit uncomfortable with this for one reason or another, should we ask admin if we can have a locked section for stage 1V only? This could be an additional section to the existing one-"for stage 1V only", or something similair. I'm a member on another forum, based in the UK  and this is how the forum is organised, and it works well.There are boards for just about everything else, so why shouldn't we have a section to which we can retreat and know that we'll be in the company of those who are in the same situation? Realistically all we can responsibly post to the interminable question "could this be mets?", is "check it out with your onc". As someone said, we don't have the luxury nor reserves of emotional strength to keep dealing with this on  a daily basis.

So...shall we ask for our own board, where we can be open and  honest expressing our fears and nightmares, knowing that those reading are in the same situation? Personally, until we have some form of privacy,I-and perhaps most of us- will hold back for one reason or another.

Thank you dreamwriter for this thread. 

I am a 62yr old mother of 3 sons + 1 daughter, who has been under this shadow since '95.  After the first five years, I mostly forgot about it.  I have no sisters, aunts, mother or close friends to whom I can talk about my fears.  When I was diagnosed last Nov with extensive bone mets, I thought, right up to the day I first saw my Oncologist, that I probably had arthritis.  Boy, did I have my head in the sand.

On that first visit, before we even sat down, she said, "You have incurable bone metasteses, but we can control them." My GP and the Ortho surgeon before that would not even say the 'C' word. I have spent many hours at this keyboard since then, searching for what, I'm not quite sure, even yet.  After the first month, my DH informed me that he thought I was spending too much time 'in these places.'  I got the feeling then that he was metsed out.  So I have to ration out my talking about it.

In '95 we didn't even have a computer to search with and when we finally did get one in '97, I  researched for my daughter, father-in-law and members of my local support group.  I did not once look up BC on my own behalf! My DH works away from home on a ship so all appointments, mx were/are made to coincide with his time at home.  I realise that he is having a hard time dealing with the reality that in the near future, he will be the primary carer for our daughter, as well as being 'alone.'  Although, going by the male side of his family, he will probably have a new partner within twelve months. 

My best friend lives about three hours away by car and I don't see her very often.  My husband can't stand her husband, even though we two women met because our husbands worked together once upon a time.  We phone occasionally, but don't seem to be able to have a good natter the way you can when face to face. Anyway, Bev, has a S-i-L who has been going through this bone mets hell for the last 7 years and is now on morphine, but still working.  I had a chat to Bev after xmas and she then wrote me a letter where she told me to get done all the things I wanted/needed to do because I probably wouldn't be able to enjoy doing them at certain times.  When I read the letter a few more times, I realised that she had heard me telling her what I was telling my family, trying to keep all their chins up and she thought she had better warn me that I was going to go through some hard times. She also said that I should be 'careful' when I was doing things around the house as I would probably end up breaking bones.  I should leave tough jobs like hedge clipping and lawn mowing to DH. This letter could have been a real downer but I took it as a loving friend should, and replied with thanks. I don't think I could ask for a better friend.

I seem to be mostly pain free, apart from some residual stuff, at the moment, but I know this will change, sooner or later.  When it does I am going to demand help when and if needed and I refuse to die to some elses format.  If someone makes remarks that are over the top I will tell them so, at least they will remember me for that, if nothing else.  

My son, no 2, is getting married in May, only decided after my second dx, and I am happy that I will be here to see that.  Whether I will ever see my first grandchild though, is another thing.  It is quite frightening, when that sneaky thought pops into your head, that maybe you won't be here next xmas.  My whole family came here last xmas, the first time in many years and, at times, I found myself just quietly listening and enjoying all the chatter, rather than trying to entertain them all day long.

That's enough for this first time, thanks ladies.

Sheila

I had tried working for about 6 months after dx. Went from way more than full time, to fulltime (40hrs/week) to part time. By the time I "retired" aka went off on disability I was so tired, dragging my self home after 4-5 hours at work to tired to make dinner and getting myself to bed at 4pm. Knew I was starting to make mistakes at work.  It has been much better since I have been home, although just recently do I feel settled. It has taken a while to not feel like a failure because I can not work, my dh has been wonderfully supportive and had wanted me to stop working when we got dx. Luckily I do not need to work, we are managing ok financially and get benefits thru him.

The pain I have is mostly from meds SEs rather than from the cancer itself. Decided thatI would persure pallative care, not hospice, but management for the pain. Pain meds have made huge difference and I am looking at other things to help as well.

What frightens me most is that the drugs will stop working and the cancer will progress. I know that I am still on the first course of treatment and there are other options but... I worry about when that will happen, how it will happen, what will happen to make us aware of the fact that the drugs are not working. The unknowns I guess.

hugs and prayers to all

I am still working full time because we desperately need the money.  Luckily my job is nonstressful and not very demanding, but I am very bored.  I feel trapped but am also afraid to change jobs because of the health uncertainty.  On the other hand, spending 8 hrs a day in something I hate really bothers me, especially now.

I found a great resource yesterday.  It is a transcript from a recent conference of young breast cancer patients that was held in Dallas.  This transcipt is from a session on end of life issues.  It deals with everything you could think of, and there is a nurse that moderated who is very knowledgeable.  It is somewhat hard to read.  The link is:

http://www.youngsurvivorsconference.org/documents/LBBCendoflifeconcerns08.doc

I can tell that my husband gets tired of me talking about it.  But I am feeling more and more that I need to get this show on the road.  I think I am a control freak to some extent, and it is hard and scary to know that I won't have control at the end.  But I will feel better if I can get these things done.  So that will mean some heavy conversations.  I just worry that when push comes to shove will my husband be able to do what I want.

I am also preoccupied with saying the right things to my daughter in the journal I am keeping.  I have been readling a book about daughters without moms.  While this is painful, it has given me some ideas about areas I might want to cover.  My husband has also given me some suggestions.

Peace and hugs. 

Hey all,

I was diagnosed 2 months ago and have not been able to do any chemo due to SEs.  I really need days to leave this crap behind and not deal with other people trying to deal with my crap, if that makes sense.

My mom and dad flew out here for a month and are trying to help out.  My kids are 6,11,13,17.  The oldest one knows this is serious, the youngest just is happy I still have my hair this time.  I am trying to balance how much they need to know and how much more they need to be kids.  I am more afraid of the bad lingering, you know, mom dying for years and the emotional trauma of that.  But, I think for rightnow, they can just be kids,,,

Ohhh ladies thank you so much for this thread..I have thought of all of these things so many times, and never really found the right place to talk about it...I have so much to say here, but will try to keep each post "relatively" short, but post often....I don't think any of us really want to stand at a poduim and shout "Hey I have stage 4 b/c and I'm dying.." but we don't want to be "sssshhhhhsssssed" either...I think that is one of the things I find hardest..No one wants to hear you say you are dying...I get sssshhhhed by my mother in law, by my friends and by family members....I've even had someone say to me "You make stage 4 look good..." WTF is that supppose to mean????? "I'm only stage 2 and don't look at healthy as you"....are you kidding me????  My answer has been," well I wish I was made of clear glass and you could see my insides...."

There is such a fine line between scaring your children and informing them..My son just the other day said something about me saying I wouldn't live to see him graduate college..He is now in his junior year and I probably will see him, but when I said it he was 12.(.I had just lost a good friend to b/c and my mother was dx with mets) .I guess that really stuck in his head, and of course as a mother I now feel guilty that he has carried that so long..

I find there are days that I do want to go back to work, just because I find myself saying ":Is this how I want to spend the rest of my days.?."  The problem is I don't know how I want to spend the rest of my days,..working?? certainly not cleaning my house every day for no reason (but that's what I do..) I feel like I am roaming , looking for an answer that will never come..I feel like I am running out of time,and no one understands me...I certainly"feel " differnet, and my scans haven't  been bad lately but something is going on..I have a feeling my death is going to come quickly..

A friend from here once asked me, why do we seek out friends on the boards ?? We certainly all have friends in our lives,and  family, so why do we have this need to have the friendships here?? She really didn't have the answer and neither did I, and I have thought about it so much, because you ladies do mean so much to me..I think this post may have just answered it...I think because I can come here and say what I'm feeling, that I feel I am dying, or that I am scared of dying, or that having stage 4 sucks so much and I don't want to be told I'm fine by family members...I watched my mother die of b/c, and I know what happens..I hate having to put on a happy face when my insides are slowly shutting down..

Okay I said I wouldn't rant on but I did..I have to say that felt really good...I think this is the best idea ever ..I just hope it stays and is helpful to everyone here.....Huggles KLynn xoxox

Pookie, Yes, thank you for that link.  I haven't finished reading it...but great stuff.

Concerning the working discussion.  I am on disability.  I was working very part time at a vet's office as a receptionist until a couple of months ago.  With some progression on my scan's in December, we added tykerb to my treatment regimen.  After stopping and restarting a couple of times due to horrible diarrhea, I think I've gotten a handle on it by taking lomotil three times a day.  However, I am so fatigued, I just don't feel like going back to work.  I miss the interaction with people.  My hat is off to those of you who work...especially full time.  I think it was Elaine who gave the way I feel the perfect description....battle fatigue.  Although, at this time (expecting this to change after scans in a couple of weeks) I haven't been on rough chemo.  But I am just physically unable to work.  I am trying to use what little energy I have to do the things I WANT to do.  I am fortunate and so blessed that I do not have to work.  If I could wave a magic wand, I would want that to be the case for everyone here stage iv. 

Going back to the 'battle fatigue'.  One time on a treatment day, I was having a very down, emotional day.  My favorite infusion nurse hugged me and said some things that validated my feelings.  She said, you been fighting this disease since 2002.  Over seven years...over five of those with mets.  She told me how hard that has been on me...physically, mentally and emotionally.  Out of the past seven and a half years, only six months were without being in treatment.  I am tired of all this.  And to know, as I am having progression, I will have to start even more difficult treatment therapies...sometimes I wonder if I going to be able to do it.  So do the chemos/treatments stop working?  Or do we just become so battle fatigued and sick of it all that we just give up/give out? 

Keeping it real,

Bethie

BTW, there are so many great things being discussed here...I will be posting more to address them.  Especially dealing with family.  I'LL BE BAAACK!

KLynn,,I've feel exaclty as you and quoted you below. A ccept my sincere hugs.  I'm your sister on this one and will stand with you.  We have miraculously become one.

I feel like I am roaming , looking for an answer that will never come..I feel like I am running out of time,and no one understands me...I certainly"feel " differnet, and my scans haven't  been bad lately but something is going on..I have a feeling my death is going to come quickly.

I'm going to go look at .Pookies post

As i said earlier,, keep it real ladies.

Thanks Lynn...Hugs felt..

RanD,  one of my favorite quotes is ---"A real friend is one who walks in when everyone else walks out"--ANON....

You're right though, kind of nice to not be sick enough..lol...

Watson sorry to hear you are in a bitter shi**y  place--being on the toilet for hours will do that to you.I had the same with Xeloda and never really found anything that worked for the trots...I too hate the "chin up" cheerleader rah rahs, but I think sometimes the people around us don't know what to say..

Great thoughts here ladies..Huggles Klynn xo

Love ya too, Dream.

My post was a bit in the 'trashing' vein.  I really didn't mean it to go there but I guess I was trying to express that it's hard to say what I really feel lately knowing that the majority of my responses would be from well meaning sources that yet have no real clue.

I've been thinking about how I want to spend the rest of my days lately.  Just like I'm de-cluttering my house, I'm trying to de-clutter my thoughts and feelings about all of this.  I've decided to diminish the fluff and bull caca in my life.  No time or reason for it.

I'm still a relatively positive person.  Today, not so much with the bathroom issues and OHHH my itchy rash on my legs.  I'm about to lose my sunny disposition.  haha

Thanks,

Watson