Facing the Future

dreamwriter

This thread is not for everyone and you may not want to participate in the discussion.

This is a place where you can allow yourself to face the future.  From the time that we learned that stage 4 was incurable; we have known that we will not survive this disease.  Whatever we want to say in here; stays in here.  It is your own personal chapel.

It is the hope that when we want to have someone to recognize the plight that we are in, we will be able to comfort one another.

Please bring your own tissues.

saint

The fact is: I am incurable...I am terminal....That is my reality!

I am sad & angry at times, but that does not mean I am giving up, letting go or being negative when I address facts that can not be changed. I hope to find like souls that understand & share this situation. There are many issues I would like to share with other Stage IV survivors. I am here for you. too. Where shall we begin?

HUGS---Be well & stay strong 

Anonymous

Just popping in to say, thanks, dream and saint.  Sometimes I need a place for just 'us'. 

I'll be back to share.  Can't keep eyes open any longer tonight..this morning..lol.

Hugs,

Bethie (aus)

LilaT

Hi,

I too, am trying to face the future, unknown as it is.  This stuff has spread all over, even in my foot and knee.  I feel it progressing so quickly.  I am starting another round of chemo on Wednesday and I am trying to stay hopeful and positive.  For the first time in the two years I've been battling this, I feel like I'm really sick.  But, as weak as my body is getting, my spirit is staying strong.  My faith is in tact and many days, I just camp out in a quiet place with the Lord and think about His goodness.  I have to trust Him with what's coming.  It's out of my hands.  But, I know He is faithful and I know He loves me.  Keep looking to Him for whatever you need.

Blessings,
Lila

LynnW

Hi

4 years ago i was diagnosed with ILC to both breasts. 13 lymph nodes positive. Er Pr positive HER neg.   I had a bilateral mas,,then reconstruction that had to be halted for radiation then started again.  Monthly injections of ovary suppressing drug to my stomach,, then finally  my ovaries removed so that i could stop the injections. Arimidex for 4 years.  Genetic testing done but says 80% not genetic.  yet my mother was taken with this horrible disease over 20 years ago.  Then 4 years almost to the day,, i had back pain. Mild at first and onc said not to worry unless it was all the time.  I finally told them my rib hurt and so they did a bone and cat scan.  My back bone and pelvis and ribs are extensively covered with cancer. 3 months later my liver showed two tiny spots,,, and then i felt the nodes in my neck pop up,, but they are ignoring those.  They put me on Taxotere which after the first chemo 4 years ago is the worse thing I've ever experienced.  Bone pain so bad i'm living off percocets.  I can't function most of the time,, and when i can i think i'm too depressed to enjoy anything.  They are telling me its chemo forever. lol    Try to get your head around that one and stay chipper and smile. lol 

Anyway i'm here to vent.  I'm not god fearing so i can't look to him for guidance.  I try to dig deep inside to make sense of all of this but can't find anything that makes sense about it.  I was 42 when diagnosed and had finally met the man of my dreams after 17 years with an abusive man.  He bought us a new wonderful home,, yet i can't enjoy it because my new home is the sofa,,, with my pillow and blanket.  He's a saint and has stood by me all these past 5 years and i feel all i've brought to him is bad luck and problems. Where is the sense in any of this. I've withdrawn from friends and family.  I have no energy to even go to the doctors office and i don't want more pills to hide the way i feel and make me less of who i was. There seems no escaping this prison i'm in.  I call it my cancer prison.  Sorry to depress everyone but I needed to vent and get it out. Surely someone out there understands how i feel.  Too many people try to pull me out of my dark place,, but only a cure would do that.  Thanks for listening.

Lynn

dreamwriter

Lynn you are just the first of many that will express that they have a "dark place" and it is not right to deny it.  We must accept that there is a spot in your life where you can cry, scream, and vent.  Your public face may be more cheerful.  Perhaps drugs help mask the pain and depression but they cant cover everything.  I dont have a relationship with any higher being.  When I go to my dark place, it is simply a dark place.

There is more things to think about with cancer as well.  Have you made arrangements or is your family going to do it as part of their grief therapy?  Do you have memory books?  What do you want to control and what do you want to leave for the family to do?

EWB

Saint, Dream and company- I am so glad that you have started this thread. We need a place to be trul open and honest about being stage 4 and everything that comes with it. I am always concerned about scaring or freaking others out.

Hope today is a good day,

Elaine

ElaineD

I'm glad to have found this thread. Sometimes we just want to be with those in the same situation-wonderful though it is to get love and support from friends, both real and virtual, sometimes I just want to talk to people with the same prognosis.Then I can be open and honest, without fear of upsetting my loved ones, or frightening online sisters who are nowhere close to our situation. As Elaine above said, even on the mets forum it feels as if we have to hold back at times for fear of frighteneing others, as there are so many non-stage 1V posters there.

At present, I feel physically quite well, and sometimes I find it impossible to believe that I won't survive into old age-husband and I had so many plans and dreams for when he retired, and it simply breaks my heart to think of him building a life without me. We've been together since we were 15-and we're now 53! The kids are both in their 20s, so I feel blessed to have been in their lives through to adulthood...and I know they'll be fine, but how I wish I didn't have to leave them.

LynnW

no i haven't made any arrangements.  The only energy mentallly and physically i have is to stumble around the house and sometimes vaccum or prepare dinner.  i want to go to a local funeral home and talk to them but insurance won't come until i die and so i'm not sure if they are willing to wait.  i suppose they are.  i want to make a memory book,, just find it very sad right now. But it would be nice to focus on.  Think i'll go online and find funeral homes in the area and what they offer.  i want to be cremated,,, not sure of the spelling.  My ashes sprinkled on the pond behind my new home.  I'm a wildlife artist so that seems fitting. I also dont know how home care works or if my company benefits cover it. i don't want to die in a hospice.  my husband and i agreed on that but i want the care i need here and not left alone all day while everyone is at work.

 its crazy we have to think about all of this on top of everything else.  I'm still on chemo so i'm not dead yet,, but the inevitable is coming.. i know that and always like to be prepared for everything.. even this.

lynn

badboob67

Lynn,

I think you've said a lot that many of us feel.  I know that I need to "make arrangements"...I know that I owe it to my family to ease that burden for them, but I can't bring myself to do it. For one thing, I wrestle with the idea that I would like to live my final days in my own home (if possible), but is that fair to my children? I can't even make the decisions about healthcare proxy, etc.  I don't even finish projects I started--I think because, subconsciously, I've decided if I have things left to finish I won't die.

I did well on hormonals for 2 1/2 years until I started Chemo last September. I'm already on my 3rd chemo (allergic to TAXOL, too much NEUROPATHY with ABRAXANE so now on TAXOTERE). I've only had one tx of the TAXOTERE and already I know the onc is going to pull me off of it because the NEUROPATHY has gotten even worse. Not only do I have fear and anxiety about how the next chemo will make me feel, it sure seems like I'm running through a lot of chemos in a short period of time. I don't even have the grace to just have a chemo fail me; I get to feel like it's my fault because I just couldn't "handle" them.

I catch myself sometimes, when talking with my kids, speaking of the far-off future as though I'll still be around. Sure, there's a small chance I might be but we all know the numbers. I feel like I'm lying to them and setting them up for even more heartache.

And, throughout this cancer mess, life around me continues to go on... financial troubles, husband out of work, kids going through "normal" kid stuff, parents aging and having health problems of their own, being treated like a roommate and a chore by the man I married...adjusting to the fact that I am now unable to drive because of the chemo and am barely able to participate as a member of the family because of the chemo...am I really doing anybody but myself any favors by continuing to plug along?

Don't get me wrong; I have hope and I have great faith that comforts me. It's the faith that helps me push those feelings out of the way and get through the day. I'm glad you started this thread. Still, though, I know I'll be editing my thoughts somewhat because I know sometime in the future my family might come to the boards and read the posts I've made after I'm gone.

(((HUGS)))
Diane

saint

Hugs Dream! Welcome Bethie Lila Lynn EWB & Elaine! I am glad we have found each other.

THIS SUX! But that being said-what do we do about it? I think of all kinds of things regarding my demise. There are SO many issues, concerns, fears & sadness involved with our dx!  I have worried about discussing most of it on the mets thread since so many there seem to believe they are going to experience a miracle. Far be it from me to negate that belief if that is what they NEED to believe! God knows I felt like that once-a LONG time ago!! (does anyone have any idea why NON-stage IV ppl read & post on the mets thread?-I would have avoided it like poison!)

Lynn----have you discussed changing tx so you may find QOL? I was on a tx that was "working" but since it was keeping me in bed most of last winter with a transfusion every other week I had to ask: to what end? I took a break & felt better almost immediately. My tx was changed & I have had a reprieve of 10 months now. Yes, I know it won't last---but I say we should feel as good as we can for as long as we can.......When  you feel like dog-pooh it is almost impossible to enjoy ANYTHING!!!!!  Have you told your onc about how bad you feel?  HUGS

So......do we plan our own funerals? I have considered this. I am in process of paying for a companion spot for dh & myself in our cemetery. When  we "remade" our bed last summer, we decided to use the headboard from the bed we have slept in for over 30 years to make our "boxes"....seems fitting doesn't it? Final "resting" place & all that?

Anyone else? Casket? Cremation? I think it will take a LONG time to cover all the issues...here's to all of us having the time to address EVERYTHING! HUGS

Be well & stay strong 

saint

HUGS Diane & welcome---glad you found us!

I can empathize! I always thought I'd do chemo after chemo with all the crap & se's until it failed me. It NEVER occurred to me that my body would keep me from doing tx's!! I guess the good news is-if YOU quit a chemo you can always try it again (but why would we want to with those se's??)

I talk to my kids about my NOT being here. They can't take much at a time, but we have had numerous conversations-some in family counseling. i don't expect to be here for their weddings or birth of their children, but I never expected to be here for HS graduation & my son will graduate in June---I feel fairly confident I'll make it.......but then ya never know! 

Yes, life goes on around us! Seems unfair! If there was a quota for bad stuff happening to ppl we sure would be skating free wouldn't we? I don't think you should edit yourself. The truth is the truth & who we really are is what our loved ones will be seeking after we are gone. If mine find me in these pages then they will see a side of me I only shared with my bc sisters & they NEVER saw in our life together. Is that unfair? I don't think so.....big hugs, hon. 

badboob67

Saint,

My oldest son is graduating this June too. He never told me, but one of the things he repeatedly worried to his dad about was that I would not be around for his high school graduation. I tell you what, that riled me up! I'll be danged if I put all that work into a kid and didn't get to see the "payoff"! LOLOLOLOLOLOL!!!!! 

As for some of the non-stage IV people who post on the mets section, I do know that several read and post because they became acquainted with another poster before the mets came into the picture and some visit because they "know" one of us from another part of the boards.  Many, I think, visit there for reassurance--and I don't mean the ones who come there with a symptom and ask a specific question about it. I mean, there are those that either consciously or subconsciously attempt to allay their fears by examining others in order to identify differences that they can cling to like a life preserver. I think we all probably do that to some extent in many areas of our lives.  If we can find that little bit to cling to, we can convince ourselves that it can't happen to us.  I don't blame any of them for doing that; it's probably just human nature.  I do, however, have difficulty keeping my mouth shut (or rather my fingers still) when one of "them" will post innapropriate comments like "you'll be done with chemo soon and you can move on" or similar statements. Again, I am sure that there is no malice involved--they probably don't realize that they're in the mets section for some reason. Still, it can be upsetting.

(((HUGS)))
Diane

saint

Totally agreed diane! MOST of them seem compassionate & concerned & I understand that "clinging to hope" thing, too--BUT it's the non-mesters that come in whining & complaining about how they are SO tired of it all & want it done! I have to "still my fingers" too (loved that) from typing, "I would GLADLY change places with you!!"........I always try to remember that we should not compare ourselves to others & the worst anyone has ever know IS their personal worst. Usually I am understanding & compassionate, I do NOT want to be intolerant, but sometimes it just gets to me & I know it burns others as well.

.....guess this will also be a "vent" thread! LOL

dreamwriter

Hello ladies (I can say that until we get a man in here).  I have had sorta mini plunges into planning my funeral.  I went to the nearest funeral parlour and got the information.  At the time, I was walking with a cane and my friend was in an electric wheelchair.  So naturally, they addressed her.  The snicker value got us through the whole interview.  The first thing that hit was the prices.  OMG.  I wanted a simple urn.  $800 CDN.  WTF, add $3,000 for the elegantly furnished "living room".  I saw my only inheritance to my family going to the furneral parlour alone.  So the bldg I live in donated the Common LivingRoom (Party room) which features a kitchen, tables, couches and plenty of parking.  Cost $0.  I am having an urn made with an angel feature (I collect angels).  Cost $200 and 2 hours work.  The pickup fee and cremation $300 plus another couple of hundred for appropriate paperwork.  It is up to my family to pick the day, decorate the room and inform family and friends.  It is up to my friends to provide food and beverages.

My family knows that I am dying.  They feel that it is shoved in their faces because everything is palliative or hospice.  But they have had to accept that.  I feel the funeral industry is just too much.  Charging all that money to mourning relatives and if they dont choose the best of the best they feel they are cheating ME.  Im sorry, all I want is a power point program that shows who I was.... baseball mom, guide leader, writer, crafter and long time working mom.

After that, my angel collection will be divided up and sent to the appropriate people.

Sounds reasonable.  But I dont want it to happen for a long long time.  I want to see Steffi in Montana and perhaps get to Florida and float in a real ocean.  And if there is time and whatever, visit friends in BC and get to see the whales.  They are reasonable... even though I have no money to travel. 

My biggest thing about this is that suddenly I am special.  I was a plain ordinary person until I heard the words Breast Cancer.  And when a test showed the mets, I became special to a great number of people.  I fear it will wear off.  I wasnt supposed to live much longer than 18 months (stage four, mets to spine, liver and lungs plus left and right pleural effusions - water on the lungs).  It is just past my 3 yr mark.  So maybe I am wearing down my specialness?

toyful

Hello Future Facers! I heard about this forum from Dreamwriter over on the Beach board. By the way, Saint, I am relatively new to the Beach, but I hear your birthday is coming and they are already celebrating on the beach, so maybe go check it out.

I appreciate that you have started this forum, Dreamwriter. I saw your post yesterday on how you had started the forum, but I was so depressed yesterday, I could not bring myself to look at it. Today, I am feeling a little more up, so decided I could face it. And dreamwriter, cancer has not made you special. You were special since the day you were born (I will not bring God into this) and you still are! Cancer has nothing to do with it. IMO

I have noticed lately, on days that I feel very weak and uncomfortable, I am very depressed and can only think about how I need to change my will, think of who I should leave what to, all things concerning my family's future. On days where I feel better, I can enjoy small things and don't quite believe that I am dying. I find it hard to wrap my head around the idea of dying and have spent alot of time trying to decide if this is fair or if I am being grossly cheated. Lately, I have come to the conclusion that I just live in a time with a big nasty disease (kind of like a pink plague) and I am one of the many who has been swept up into it and will die from it. Not really fair or unfair, just part of history. Of course, next week, I may look at it differently.

Supposedly, my oncologist has now switched me to quality of life chemo, which I am finding an oxymoron so far. I am going on a vacation at the end of this month, but I have to get in 1 more round of chemo before I go because my trachea tumor is getting larger everyday. I feel like this is possibly my last vacation with my family, so I don't want to feel like poopy the whole time, so I kind of just want to run away and not to do the chemo, but the size of this tumor is freaking me out so I am probably going to do it. I feel like my gut keeps telling me to stop the chemo and just let things evolve naturally. It does not make alot of sense to prolong one's life if it is going to be so insufferable.

DaughterMom

Can I post here on occasion? I feel as though I am alone sometimes in this world. I am my mother's solitary care giver, and sometimes it feels like I am all she has. She is starting to withdraw from friends and family; she is reserving her strength and is probably just too tired to make small talk and visit. Most of my friends are avoiding me like the plague, because I know they don't know what to say to me. I am preparing myself the best that I can for her passing. It is the single most, hardest thing to work through, but I am coping. Most days, my mother and I have "normal" days, we eat, laugh, joke, talk about other people and carry on. Some times she makes reference to the future, and about two months ago, I can honestly say it was awkward for both of us. But now, if and when she does make reference to the future, and her references are usually not too far away, for her to add, "If I am still here", does not phase me or her at all. Some days, when she is ready to talk, we talk about her decisions regarding her health, we talk about the treatments openly, we talk about her cremation and wishes for her memorial, and my mother has grown to trust me in this situation, to know that I will listen and that I will not break down and cry for her, because that would be too much for her to bare. I guess what I am trying to say; sometimes it is good to talk to your loved ones. But only when you feel that they are ready to hear what you have to say, and now may be too soon, but when you do, they will appreciate it very much. I am sure they have many, many questions. And another thing, please don't edit your comments, in fear your family will find your thoughts and feelings after you have passed. They will look at it as a true gift.

LynnW

I know what your saying about the other threads where met women are still hopefull yet it really makes me feel better when someone says,,, the chemo i'm on may actually kick ass etc. 

Then i log off,,, lay back down ,, pull my knit picky hat back on my bald head and reality sinks in.  I realize chemo is never going to kick ass. The doctor said i will never get rid of this.They can only slow it down.   Thats the reality of metatisizing. When it comes back they say theres no getting rid of it.  I appreciate and am envious that so many women still have dam hope that this will somehow go away... I honestly don't know how they do it.  One of my biggest problems in the past few months has been going over and over with family and friends,, that I won't get better.  They have the same hopeful outlook but enough is enough.  Everyone keeps asking how long do i have to stay on chemo.  I bite my tongue,,, because i'm tired of having to repeat that i'm going to be on it until I Die.....  Hello people,, where the hell have you been for the past 10 years or so that they have found no cure for this disease.  Its like all my family have convinced themselves that i'm going to be ok to calm their own fears. they ignore that taxotere is practically killing me and i'm only 1/2 the person i was a year ago.

Another issue.  yes i too have tried to talk to my teenage boys about maybe not having another christmas etc.  they actually get mad at me for talking that way,, so now i have no one to discuss it with.   If they read this after i die heres what i want to say.

Boys,,, please don't stick your head in the sand when theres a crisis to face .....try to be brave and strong for the people you care for.  I just needed someone to understand and accept it so i could make peace with it myself .  I was only trying to get everyone used to it so you could be prepared.  don''t ever think I was  giving up. Theres no way i would give up and leave you all alone. and hey,, I love you. signed mom

Mazy1959

Dream,

Dear friend..this is a good idea. A place where those of us who may have some differing issues than others because perhaps we are on borrowed time. My oncs have told me I could live a near normal lifespan and I have every intention of doing so. But I know that it may not happen the way I plan. I have a will and have the insurance papers where all can find them. My family knows my beliefs and I fully trust they will honor my wishes. Funny that I couldn't sleep tonight because I was a little down today. I came on here and found this board. I dont know why we have to have this awful disease that destroys so much for so many...but I do know that I have had good things from this also. I know who really loves me and who my real friends are. I know that I live in a community that cares for me and prays for me on a regular basis. That may not seem like much to some but it means the world to me. I have this wonderful site to come to for whatever is bugging me for the day. If I go to chat and need to vent about problems other than cancer its ok...its like calling your best friends after you've had a long day just to hear their voices. I refuse to release too much of my stress to my mother..she already buried one child and my family and I and my brothers sons are all she has left. I was diagnosed with breast cancer 7 months after my brother, JR,  died an awful, painful, miserable death. My mother who never misses a day of work..took off 6 weeks when he died. She had to take anti depressants to return to work because everytime she was spoken to..she would break down. The hardest thing I have ever done was to tell her I had cancer. Much worse when I got mets. We both worked at the hospital ( she still does) and the night I went to ER with pain, they admitted me and tentatively diagnosed mets in my spine. It was very early morning and I wasnt able to call her before she went to work. Knowing she would find out I was admitted..I had to call her at her extension and tell her. She was afraid I was holding back the truth about my diagnosis and so were other members of my family..so I invited them all to come to speak with my onc and my neurologist. My neuro spent 2 hrs taking  each family member out of the room and answering their questions. That helped a great deal. Each time my docs came in while I was admitted and family or friends were there..I told my docs to speak freely. My family was far more upset than I was. I am not a super religious person but I certainly have faith and beleive in God. I have never gone into a deep depression over cancer but of course I am saddened by it. I feel as tho if I die I am ditching my responsibility to my family. Many years ago I was kind of the chosen one in my grandfather's eyes to take the lead in family matters..to keep peace..to judge fairly..etc when the time came that I was needed. I have thankfully found a younger cousin who I have chosen..although I dont think she has realized it yet LOL...to take my place in the event I dont make it. I have tried to give out as much info to all my family as possible as for the health history of our family etc. My records are available to any of my family. I think what bugs me the most is how cancer has taken my physical strength, my patience and my ability to do alot of things I used to do. For darn sure I cant roller skate anymore and I had planned on teaching my grandkids to skate. I cant take them on bike rides or long walks..only around a half a block or so. It doesnt seem to bother the kids as they have never known me any other way. They know Grandma has a bad thing in her back and it hurts her. They have fixed it a few times with their little toy tools LOL.. God luv em. They kiss my back and hug it , thinking a kiss will make it all better..and for awhile it does. I have always wanted to be that person who was remembered for her luv of my family, all children and a good friend to those in need. I pray thats how I am remembered. I hope people remember how much fun we had cause honestly I do have alot of fun. I luv to be happy !!!! I luv to laff and smile.

Daughter......as far as I am concerned you are most welcome. I think it may help us understand how our kids may feel. God bless you for taking care of your mom.

To all of you.....and to dear Dream..your are and always will be special.  I luv you all...Mazy

LilaT

Sometimes I feel a little panicky at how fast things are happening to my body. Up until now, there has been little discussion with my family members as to prognosis.  But, we have to face it and talk about it.  My husband is in somewhat of a denial, always talking positively, which is good, but I don't know how to help him prepare.  My four grown sons have a difficult time talking with me about it. They are so supportive and loving.  My heart just aches for them.  My biggest task right now is to figure out how to help my family with this process and I don't think I can take too long to do it.  I don't know where to begin.  They all know, outside of a miracle, I'm not going to get better. 

We just buried my 57 year-old brother-in-law last week, who died suddenly of complications from Salmonella poisoning.  He was in perfect health until he ate some contaminated protein bars from Cosco and got sick.  The suddenness of it left us all with our heads spinning.  I couldn't help but think, I'm not far behind him.  But, I am glad to have the opportunity to prepare, to say the things I want to say, to focus on the things most important to me, to love my family as much as I can, while I'm still here.  Time becomes so precious, I don't want to waste it. 

Bless you all today,

Lila

Fitztwins

Wow, great idea.

I am afraid to tell my boys (age 8) that I will eventually die from this. I don't want them to worry. I don't want their childhood filled with this cancer. Every time I think about this I get so freaking sad. I am scared. Scared of leaving them. I feel like I am frantically scrapbooking and journaling my thoughts now, before I really get ill and can't do it (emotionally).

I feel this dire need to pay off everything. Car loans, CC (not to many thank goodness). I don't want to leave any kind of burden for DH.

I have started planning my funeral. I cut a CD of the music I wanted.  I also started a box of with photos, insurance stuff, etc...Another sister here posted a website that will guide you through it all. www.mywonderfullife.com.

I feel like I a walking on thin ice. Off the hard chemo, but still on treatment. Waiting until the next scan. Trying to plan life, but waiting to exhale.

All of a sudden I will be driving and then I think..I am going to die young. I won't get to live to see grandchildren. See my boys marry. Watch my nieces and nephews grow up.

I can't decide to quit work or keep going...I am afraid to plan for the future beyond a few months. Should I plan a vacation of a lifetime or just plan on living? I was going to cash out my 401Ks, but now....they have tanked. I should have done it in JUNE! when I first thought about it. Working keeps me sane. I love it. It is flexible. Plus a great income.

I think what most people with out terminal cancer don't know, is what it is like walking around with a timebomb inside you. Maybe people with other diseases feel that way too. However, the average person doesn't get it. Sure, we all die. But we all hope it Later rather than sooner.

I let myself hope for many years. Realistically I know it might not happen.

I think a lot about wether I should die at home or in a hospice location. Do I want my boys to see me? wasting away?

I have great waves of sadness come over me. I don't find comfort in going to Church. I do pray. I find comfort here and with my friends.

I had an appointment today with the orthopedic office. My next appointment is a year from now. I thought "hmmm will I still be here?"

Janis

EWB

Just curious, I know we are all stage 4's but how is everyone doing right now?  I have been stable for the past two years and really hope it stays that way. When I was dxed most stats I found were showing survival time to be about 2 yrs. I feel a sense of relief that I have made it that long but now worry about something happening and meds stop working. Shouldn't complain because I am still on first course of meds (femara and lupron).

Someone mentioned earlier, I think Saint, about being cranky with earlier stages....one thing that I have problems with is hearing complaints about having to be on AIs for 5 whole yrs and how they are stopping or changing because they don't like SEs. I (and I expect others) will be on AIs for life and I am really hoping it will be at least 5 yrs if not more.  I get tired of being on a treadmill and no matter how tired I get or how much I hurt...not able to get of.

How do you move past the cancer or get over it? 

Lila...so sorry to hear about your b-in-law, holy mackrel.

Prayers that today is a good day.

Mazy1959

I bought a small family group of cemetary plots near my brother, father and cousin. Getting it as a group didnt seem to bother my family. I told them that I wanted to buy those plots near my family before someone else got them. 

Lynn, I suppose we all have a dark place. Some of us have more darkness than others. We have to handle it the best we know how, regardless of what others think sometimes.  I do choose to be happy and hopeful because I cant stay in that dark place for too long at a time. My coping mechanisms are my faith and I guess you could call it light heartedness. Breast cancer has ruined some of my life but certainly not all of it. I am alive and as long as I am able I will act like it LOL. No one wants to talk about the possibilty of us not being here for another xmas etc. If your kids dont want to talk about it..trust me they are aware it could happen.

I apologize for my long ranting last night LOL..I didnt realize it was so long until I came on today ..Hugs, Mazy

Fitztwins

EWB,  I am like you. Doing well on treatment. I feel good. I know that  I  have a good chance to remain stable. 

I wanted to get on a vaccine trial so badly. Still trying.

Anonymous

Oh my dear sisters,

Even though this thread is here and not the Mets board, I fear this is still not as 'safe' of a place as we need.  And at the risk of upsetting people, I, too, do not understand why so many non stage iv posters feel the need to post so much on the Mets board.  I totally understand and welcome friends following friends and offering support and encouragement.  I am borrowing this statement from another mets friend.  In what other culture would someone come up to you and say, 'I have this terrible 'whatever', do you think it is what you have?'  And wanting you to say, 'oh no, you don't have what I am going to die of'.  I completely understand being concerned about every weird ache and pain we have once we are diagnosed with breast cancer.  But to come to a place where we are fighting for our lives and ask (desperately hoping not) if you are going to be one of us?  I find it very insensitive.  I'm sure I'll will be thought of being insensitive towards them for even saying this.  But, damn it, we ARE fighting for our lives and have things we want and need to talk about that ONLY others walking the same path can possibly understand.  Yes, we have a terminal disease.  There is NO cure.  We are in treatment until it stops working and we die.  There is a helluva lot of baggage that comes along with that.  I want and NEED a place to spread out my baggage and discuss it with others who have the same baggage.  And some of it I don't think is healthy for those who don't walk this path to see.  Plus, maybe I don't want anyone but those walking this path to see it.  But this a public forum.  So it is open for all to see.  Until there is a board for Mets only, it will continue to keep me from completely airing my deepest thoughts about living as I am dying of this horrid disease.  Because as we know, there are some very dark, difficult places.

All my love for my sisters,

Bethie

dreamwriter

We chose not to tell the family or anyone really about my cancer until Jan. 1 - I was diagnosed Dec 20, 2005.  And my SIL was getting married half a world away.  Yet the news could have reached her and other other relatives and put a pall on the festivities.  When her parents came back and we had our usual late Christms them, I drew Christine into my new bedroom and explained that I had breast cancer.  I was expecting that by tellin her, she would spread the news quietly, discretely.  And as the months went by, then years I became very angry with the family.  And finally I told my MIL why.  It was 2 yrs later and not a single family member called my husband and said "if you need me", "anything I can do", "so sorry man"..... but no.  I know my husband never killed any one so why would they not treat him with an iota of respect.

And when I exploded to the MIL, she told the family and they started calling.  But they barely talk to him.  They ask about me.  At his work several friends will ask about me and then him.  And for a while he wanted to scream.....  And he saw all the good things happening to me while his life sucks.  I went to vegas, got a new wardrobe cause I dropped a size.  I got gazillions of christmas cards cause I sent out gazillions of cards first.

And it is all about me.  I cant get my head around it.  And I have used it to get my daughter into college and onto a road that she is happy with.

I have thought out my funeral in terms of dollars and cents.  I know friends would financially help but I think my family needs to plan and pay for what is necessary.

Friends have paid for Show Tickets (We Will Rock You, Sound of Music), taken me to movies (too many to count).  I am more of a social butterfly (as per hubby) than I ever was....

Not all my thoughts about death are dark and scary.  Some are.  But it is nice to share that with someone who will not get up and go on their way because they are not dying too.  Yes I have heard that live is a fatal disease and we all have to die sometime.  But basically I am preparing to die in the way I would like the least.  I will be helpless.  I will be unable to talk.  And I will be wearing a diaper. 

Thats not who I am.  I want to go back to being the baseball mom and the girl guide leader.  I want to walk off the extra pounds. I want to forget what getting a chest tube feels like.  I want to forget that I should have a medical degree for all that I have read and googled.  But for now I have had cancer for 3 yrs and 2 of them have been stable.  And to be here is ok.

LynnW

Bethie,, so far so good here on this board.  I scanned all posts and everyone here unfortunately is stage 4 with met.  Not a happy thing to say, but i think we can say anything we want on here. The last thing i'm concerned about is if I offend anyone.  If I do,, they shouldn't tune into this channel so to speak.  Perhaps it should be re named.  Like, Terminal Patients facing Reality. Then everyone would know, that facing the future isn't a place to discuss how many spa treatments they plan on having this year, to try to forget the small lump they had removed.  Or how to cope with the stress of the disease returning. etc.

I'll tell you, i had a friend,, that i would see now and then. I don't see her anymore due to my own axiety.  Actually it was my co workers wife. She found a small lump 6 years ago. No nodal involvment. She chose to have her whole breast removed. She didn't need chemo or rads,, She just got her 6th year of clean health.

 Well at christmas she and her husband were here at my home,, and they started grilling me about my met and what it means etc. She was teary eyed and telling me she of all people knew,, what i was going through etc.  My other  friend was here,, and she was saying she only knew through me,, how important getting breast scanning was and before this she never thought about it,, so i was being of help to her and she thanked me. lol   I gotta tell you,, these two women do NOT understand what I'm living.  Are they thanking me for having terminal cancer so they can be more on top of it???   They aren't doped up on pain meds all weekend after a dose of taxotere, They aren't pulling on itchy wigs to go to the drug store to stock up on more meds,, They can look at themselves in the mirror and not think they resemble a prison camp inmate,, all skinny and bald.  They aren't wondering finacially how they will make ends meet when theres a 5 month waiting period between unemployment and company LTD.  They don't cry when there husband gets teary eyed too from the fear of losing them.  If I sound harsh and resentful,, Well i am.  I'm doing what "i" want from here on out and if someone gets offended from my attitude,, then they must move on.  When i was first diagnosed I didn't come to these boards.  It frightened me. That was my choice.  So please don't be afraid to discuss,,, palative care,, diapers,   pain meds,, the future.  I for one will be reading and understanding. Its not the place for everyone,, just like i don't go jumping around the newely diagnosed sites.  I would not be of much help to them,, and i don't think they would be much help to me.

 I also agree with Bethie,,thats its a bit thoughtless for people to use us to try to self diagnose.   Part of me is happy when they come back online a week later to let us know it was all false alarm,,, but part of me wishes they had kept the info to themselves.  I want to be the one with a benign lump.  I want to be the one that says,,,,,whewww close call but i'm ok.  Surely any human being would understand that. anyway,, thats my rant.  Take it or leave it.   hugs to you all ,, stay real.

Lynn

Fllorik

Just a quick question about family plots......When you say family plots, who does that include? What do you do if your children move away? Can they sell the plots?

Fitztwins

 I never posted 'is this mets' on the mets board. For the exact reason you mentioned. I so did not want to offend. I did PM a few. I voiced my fears on Stage III board. I did post on the mets board though. Mostly in support. I have been on both sides.

I have had a few PM and ask (very nicely that I didn't have to respond) about my symptoms.

We all know that you just don't know until you know. We can offer all the advise in the world and it wont change until that official dx.

The posts that bother me the most? #1 I am so scared (they are early stages), WTF we are all scared. and the SHOE did drop for us.. #2 People who are not frequent posters (less than 10 posts) who hop on because someone they know is or has died and ask for our prayers. THAT really ranks me.

Anonymous

Lynn,

Thank you.  I didn't think I was the only one who felt like 'we' make some early stagers feel better about themselves.  I promise I will try to be authentic to myself and to y'all.  I truly don't expect people who are not in our shoes to really understand.  But, dang it, there are some real dense people out there who instead of keeping their mouths shut....open mouth and insert foot.  My onc sent me to the ophthalmologist for an eye problem last week.  Well, the girl who did the initial vision test, proceeded to tell me about her 38 year old aunt..."they opened her up and just had to close her back up and she died".  I must have had a go to hell look on my face, because somehow I managed to keep my mouth shut.  She attempted to redeem herself by saying, 'but they have so many new drugs now'.  I just muttered, 'we still need a cure'.  As KellyC says, 'they walk among us'. 

Dream, I know the difficulty of dealing with husbands while we fight to live with some dignity and fight like hell to stay alive and live some as we do it.  Unfortunately, mine couldn't deal and bailed on me.  Men can be such babies with grown up bodies.  It takes most all the energy I can muster to deal with what I have to deal with.  Not much left over for selfish friends and family members.  So when the unselfish ones come along to attempt to lighten our load, of course we gravitate towards them.  You keep going when you can to movies and such.  You deserve it.  Do you want me to send your hubby a 'hang in there (or a crazed scorned woman will come beat your butt)' card?  Hugs, my friend, and thanks for starting this thread.  Know you are loved!

To being 'real',

Bethie

EWB

So why is it that we are called on to help others deal with what we got? And why do we feel the need and responsibility to respond? Its not my job to help someone else deal with my crisis (unless dh or children to help understand) I feel like there are days when I can't take care of me and my illness; never mind the public and my illness.  I am tired of walking on egg shells around others for their feelings. I certainly don't want to offend or hurt any one but my crap stinks just like theirs, I can't spend so much energy worrying about others. I don't have the luxury.