This can't be real...

getwell

That is what I think everytime I say to myself, "I have Stage 4 cancer." Before I was diagnosed and heard about someone havng Stage IV cancer I thought they're a goner. Now I am the goner and I can't get my mind wrapped around it. I know there are all kinds of drugs, treatments, etc. and I may live for a few more years, but at what cost? Do I want to feel crappy all the time and go from one treatment to the next. Do I want to see how my husband has aged so much over the last three years? 

I am just in a real funk today and I still can't believe this is real. Somebody give me a cyber pinch. Christmas is coming and I have to pretend that I am OK for my kids. Sorry for rambling.

Hugz to all my Stage IV sisters,

Pat

Nanalinda

Pat:  You are not at goner... not at this point.  You have just received shocking news... but it is not the end for you yet.  You are concerned about how bad you will feel going through treatment, and how much it will affect your family, and those are all valid concerns.  I just want to tell you that treatment is not all the same for everyone.  I was dx stage IV in July 08... I have been on 2 different chemo's since then.  The tx. and side effects have not been that bad for me.  Now I know there are some meds out there that are very rough on the body, and I don't know what meds you may be on, but I just wanted to say they are not all bad.  I understand your concern for good QOL, that is what I want too.  Hang in there, talk to your Dr's and see what there plan is.  Hang on to hope and if you need someone to talk to, PM me.  I would be glad to help out in any way.  Linda

ElaineD

I think all you can do is give it your best shot, and take a day at a time. You may respond well to treatment:you may have few side effects. I'm 2 years now with mets to pleura, liver and bone. What I'm finding, is that it's the cummulative effect of the drugs which causes problems. Obviously we get weaker as time goes by-we're being treated by poisons after all! But My qol at the moment is pretty good, and I plan to stay on treatment for as long as I can manage the side effects. When we get to the stage of the side effects dominating my life, then I will withdraw from treatment. That is the point at which I personally feel that the burden is too great, not just for ourselves as patients, but for our loved ones.I would love to reassure you that a cure may be possible-but realistically this is not the case. You may have periods of stability and/or NED, both of which are well worth aiming for! Clearly you have assimilated exactly what stage 1V entails-not an easy thing to do. Good luck with the treatment-you may find that it's not as bad as you fear, and hopefully you'll have a good amount of time on succesful treatment. At the moment, don't look too far into a future which we can't change,x

dreamwriter

I was dx at stage 4 with 9-12 months to live.  Dec 20 will be my 4th cancer-versary.  Four years!  The first year was in chemo and I had to admit it was an experience.  We made lunches to rival the canadian food guide.  We crocheted and got everyone around us talking.  We were the noisy corner.  And then the doc said I was stable and out of chemo.  I have been relatively healthy for those 3 yrs.  I have travelled last year and this year.  Los Vegas and Florida to meet my bco sisters.  The years you have ahead of you are not necessarily hardship.  Its what you put into it.  And at some point, yes you will decline and "be a goner".  When that happens is a mystery... theres women out there at the ten and twenty year marks.  Stage 4 means its moved somewhere.... and it can still be controlled, slowed down etc.  Be hopeful my friend and if you need someone to talk to who has walked those miles.... just ask for me.

33skidoo

Pat,

I've never (slight exaggeration) felt better.  I'm on hormonal treatments and have bone mets only, but everything is going well for me.  Good appetite, no nausea, bone pain under control.  Working full time.  In fact, if I didn't see the scans, I wouldn't know I have cancer at this point.  I'm having a great time living my life pretty normally.  Stage IV is just a category.  Many of us are living with this diagnosis, not dying (at least not yet!).

(edited for spelling)

33skidoo

Pat,

If you are in a holiday funk, feel free to cut WAY back.  I don't have kids, so I can boycott it.  I've been doing that for years.  What a wonderful sense of freedom!  I honestly don't have bad memories from Christmases that my parents thought were bleak.  Cut back.  Enjoy the life YOU choose to live.

chainsawz

Pat - I say that to myself every day........really?  I reeeeeallly have cancer?  I know it's a fact I have stage iv, but at times I just can't believe I am talking about myself.  It's harder to watch the effect my disease has on my family.  That breaks my heart.....but that is also what makes me fight harder - accept what is happening and take another step forward each day....no matter how hard it may be......because that shows my family how much they mean to me.  I will fight this dragon until I can fight no more to stay here another day with them.  When I can fight no more, they will know that I did all I could to be here.......

getwell

Thank you all for lifting my spirits. This is hard shit to get through and you guys are wonderful. I will fight this friggin dragon, Chainsawz, because I don't want to leave my loved ones.

Love,

Pat

EnglishMajor

Kathy36 is a 16-year survivor on this board. One of her posts stuck with me:

When I was first diagnosed Stage Four, a hospital put me in touch with a woman who'd had Stage Four for twenty years--it had gone to her lungs and brain along the way, and she was now NED. I remember thinking, "Well, some people do live." But I sure didn't think it was going to be me.

Then a friend of a friend put me in touch with a raspy voiced New Yorker, a Jewish woman with lung cancer. "I just say I'm going to live," she told me. "But what if you don't?" I said and she laughed at me over the phone. "So what?" she said. And I realized, yeah, so what? So what if I decided that and then I didn't? What, were people going to hoot about me at the funeral, say, "God, I can't believe she went around thinking she was going to live. What a moron."

We're on a tough path, you and me. Anything you can do to cut the anxiety, do it. If that means, just for today, pretending you're going to live, if you can, do. For that one day, you'll have taken your life back from cancer.---Kathy36

KellyC

Just wanna tell you that I love you Pat!  We're gonna do this, and we're gonna do this TOGETHER!  You're my friend.........and we met sharing a bond no one wants to share, but we are in this.....together.

 After the holidays?  Lunch and cocktails! 

 Luv you

Kel

hollyann

pat, just wanted to let you know I am here for support too......I may not know exactly how you ladies feel and I won't pretend to know...But I do want ot support you all and let you know I am thinking of you and praying for you...I have heard many times form the ladies here that Stage 4 is now mostly considered a chronic illness and not a death sentence.........I knwo a lady here in Alpharetta (well know her when I see her in the store I work in) and she is 15 years NED from Stage 4 to liver and bones........She will always be Stage 4 but she is LIVING with her diagnosis.......Good luck to you and I hope you can one day say you are 15 years NED form stage 4......

chainsawz

Hollyann - thanks for sharing that!  It always helps to know there are people who are long time survivors because sometimes it sure doesn't feel like a chronic disease.  Your support means a great deal and I appreciate you!!   lisa

Chelee

When I was dx stage IIIA, Her2/neu,3+++, 5 of 16 pos nodes in 05 things were hard enough.  All the thoughts that go thru your head.  But since I've had this recurrence last sept. to axilla, femur, sacrum, possibly liver and God only knows where else!!!  I've felt so down and depressed.  I feel so hopeless. Stage IV...terminal...how do you wrap your head abou that one. There are so many here that want to hang on for their families because they see what it does to them.  That's what makes it harder for me...I really don't think anyone cares if I live or die.   In fact my DH lives in denial and always talks like I'm going to be fine. 

Yet when I have talked to his mother (MIL) and told her that sometimes I feel like he doesn't care about me.  She told me that he told her one day "Mom, looks like I'm going to lose Chelee alot sooner then I planned on".  Thats great...he talks to me like I'm going to be just fine...but tells his mother he knows I'm not going to be around.    He's 8 yrs older then me and I KNOW he wants to retire...I'm am ruining his life right now with this cancer crap.  I can't help but feel he wishes I'd hurry up and die already.   He flat out told me once when i was stage III that if I wasn't around (meaning died) that he would QUIT his job in a heart beat and he would be gone!  Meaning move to another state and retire.  But thanks to me he is stuck working to keep our health insurance.  That made me feel just great.  NOT! 

I wish I had someone that cared if I lived and it would be easier to fight.  I lost my Mother to advanced lung cancer when I was stage III...she was my Mother and best friend.  In the last 3 yrs the only ppl I've loved and cared about are gone.  So I really have no one but my husband and two dogs.  My dogs are the only ones that would miss me.  I am so tired of my DH coming home from work and just laying down on the couch and going to sleep.  Hardly ever talks to me.  Its funny how he is wide awake and watching tv until I come out in the room.  Then he's tired and lays down or goes to bed.  He just ignores me like I'm going to be around forever.  I'm just on a rant now feeling sorry for myself.  There is so much I still want to do.  The thought of being in active trt till I die is depressing.  I'm not sure if I could ever get NED again?  I feel so whimpy compared to some of the brave ladies I've seen on these boards.  Talk about inspriational warrior women.  Fighting for years on treatment.  Stage III was bad enough...but this stage IV really sucks.  They can put a man on the moon...but can't cure cancer...unbelievable!!! 

Issymom

Chelee-It makes me so sad to read your post.  I can't imagine being at Stage IV but to feel that you don't have the support of your husband is so sad.  I am sure he really cares about you and is scared to death that you will die but most men have a very hard time in dealing with those type of emotions.  They are great at first but then can't manage not being able to control the situation so they detach (self preservation).  Unfortunately, I don't have any answers or words of wisdom.  Remember you are not alone here.

Chelee

Issymom,  I think your right...my DH has become totally detached at this point so it seems.  I've always had family and friends throughout my life.  So this is so new to me to NOT have anyone but him pretty much.  He told his mom once he was going to change swifts at work so I wouldn't be sitting here alone all day thinking by myself.  Well he DID change shifts and now it's worse then ever.  Maybe he didn't plan on it...but now we are like to ships passing in the night.  When I get up in the morning he has already been up for about 3 hrs to have his coffee and such.  Then I walk in here and he takes off to get dressed for work...then he's gone.

So I sit here all day from noon till 10:00 PM.  He comes in from work and says "Hi Honey, how are you".  I say fine and then he goes into the kitchen..grabs a bite to eat.   Comes back out in the front room and falls asleep on the couch.  I swear...it's the same thing every single day. 

This stage IV dx I got in sept has my mind spinning half the time.  So times I think I can do this...but most the time I feel defeated and that's not good.   I wish there was a support group around here for JUST stage IV woman so we could talk.  But all the support groups are early stage and no offense to any of them...they just don't understand what we are dealing with.  I just want some one to talk to sometimes.  I am so thankful for these boards because without them I would have no one to talk too.  But sometimes it would be nice if I could sit and talk to someone in person.  I've thought about seeking counseling...but they only give you 40 minutes and tell you your times up.  (I need about 8 hrs just to get started.)  lmao   

Anyway..Thanks Izzy.  I'm glad you guys all get "it".  Some days I feel like such a whimp...I cry so much now...never use to be like that.  It's just not like me until now.  I start thinking about all the young women with childern and what is going throug their heads.  I know they say life isn't fair...but that is an understatment.   One more thing...maybe its all in my head...but I feel like I'm being treated differently by the medical profession now that I'm stage IV.  There is no hurry about anything...they just don't seem to care. All i keep hearing from people is stay positive.  I even went to the dentist yesterday...he was SO SERIOUS with me.  We were talking about my cancer recurrence and he taps on my head and says "It's all up here hun...you HAVE to think positive and you will get thur this".  I wish to God it was that easy for all of us.    These ppl  mean well but they have no clue what it's like.

Chelee

Fitztwins

Hi friend. Sounds like you are having a rough go. Sounds like your DH has checked out somewhat. My Dh and I don't really 'hang out' at all. I pretty much do all the talking, he bitches about work. We always dreamed I would be the career woman and he would be a stay at home dad...Well, after my dx I am sure he feels he is in a dead end job. We need his insurance too.

I feel pretty good right now, but I know that is soon to change. I don't feel like giving up, but man am I tired of this cancer BS that is now my life. The biggest time my depression hits and tears..is when I go to the cancer center. Because I know it is my hotel California, we check in and never leave. No matter if it is a lovely place or not!

My dentist, got all serious with me too. check my tongue for mets?

My family doctor...sat back like he never saw a stage IV cancer patient before. We are FREAKS.

hang in.

Aliceann

We all get down in the dumps, especially when we realize we are hanging by a thin thread.  My husband isn't in denial at all and has been with me every step of the way.  When I mentioned something about my situation, he doesn't make a comment, because he doesn't think I will leave him soon.  He just has faith that I will be held together with baling twine and 200 mile an hour tape. Pat, your husband is depressed and he goes through the day like a robot...go to work... come home.... go to the refrigerator....go to the couch etc. etc. etc.  Try to snuggle with him on the couch, or lay down on the bed with him.  If he learns that physical contact would make you feel better, he might do that.  My husband is afraid to touch me because of various complaints I have, aches, pains etc.  I make him play spa with me and he makes me feel good all over with foot massages, back scrubs, toenail trims etc. etc.  He even shaves my legs because it is difficult to do that.  Sounds crazy, but try a small aspect of it and see how it goes.  I'm not talking sexual involvement necessarily, just physical contact can be very good and he doesn't have to talk about anything that way.  It is a comfort zone that most women enjoy.  It works for us and we don't need to talk about the future, because we are doing what we want to do today. 

dreamwriter

I have a counsellor who specializes in palliative therapy.  She visits monthly, more if I need her.  It is frustrating being on a plateau of being "terminal" but reponding well to treatment and basically being slowly separated from the working world.  Separated from just about everything that you used to be able to do.  So I found some things I CAN do.  Gives me something to talk with hubby about.  I quilt (still learning and taking weekly lessons).  I made my first cake.  Small things but things that do give us something to communicate about.  I try to make my meals so that I dont leave a lot of dishes for him to do.  If I have the energy.... I do the dishes.  So he can cook in a clean kitchen.  Every once in a while surprise him into talking.  It keeps me going, day by day.

MJLToday

LOL Janis, I went in "same day" to my PCP's office and saw his nurse practioner (standard procedure fror same-day appts).  I had a bit of superficial thrombophlebitis, and I could tell she was scared to even touch me LOL. She called in the doc-in-the-office so fast you should have seen her head spin.

jinnypel

Oh Chelee I feel like jumping in a plane and coming to give you a hug.  No I don't pretend to know what it's like to have stage IV.  I find it hard enough to deal with mine.  It's amazing how some woman can become the wonder woman like you said, I'm the type that sit and cries at the supermarket, the school and to anybody who will listen (they all avoid me like the plague!!! I don't blame them!) 

My heart goes out to all you ladies on IV

Jinny xxx