Facing the Future

Options
17810121320

Comments

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited April 2009
  • saint
    saint Member Posts: 1,877
    edited April 2009

    Yep----that is how we should see it!

    I have a new perspective on so much---like trying to control things for  "AFTER". I used to think I needed to hang on til the kids went to college, but then I realized it would mean they would all be in separate places & not have each other--OR--they would all come back to this house & give up their lives to be with each other----IS that giving up their lives?? I got caught in so many hamster wheels b4 I realized--I DO NOT KNOW WHAT IS BEST FOR THEM cuz I can not see "After"! So I no longer feel bad about bringing this into their lives (as we ALL do!)  I can not know the reason for or outcome of this journey....but all things will be made clear...after!

    HUGS all--be well & stay strong 

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited April 2009

    I do not feel guilty that cancer has visited our household and that I am the target.  Athough so many things have changed (ie hubby does dishes and cooks, daughter does family laundry).  It was not my choice to do this.  And it is not my choice to make it part of everything I do.... though a lot of things change because of it.  For instance, if I called a friend and said come over for tea, she would be expecting a pot of tea and some cookies, No when a friend comes over, she brings a gift and often takes me out for lunch (see re-sizing due to over-eating).  People buy me gifts.  Everyone remembers my birthday.  I get a buncha cards.  I have friends who would stand up for me.... Saint included.

  • saint
    saint Member Posts: 1,877
    edited April 2009

    STANDING UP FOR MY DREAM-girl!!  

    NOW, TOMORROW & ALWAYS, my friend!

    You are who/what we all wanna be when we grow up!!! (but me & Peter Pan...can't say too much! LOLOL)

    HUGE HUGS 

  • Analemma
    Analemma Member Posts: 1,622
    edited April 2009

    RanD, I too have breathing issues, and am terrifed that I will die gasping for breath.  Sometimes I go back and read JoAnne's posts before she died last year.  She had lung mets, and had made her family promise that she wouldn't suffocate. I can only hope that she died relatively comfortably. 

    Sometimes I think we overthink the whole dying thing  Paul Newman said something I like, and I don't have it precisely, but something like "the secret is to enter and leave the world without making too much of a fuss about it."   Maybe there's too much mystery about death to be healthy for the ones who are left. 

    Then, maybe I shouldn't have had that third glass of wine tonight.

  • LynnW
    LynnW Member Posts: 191
    edited April 2009

    Does anyone ever wonder how sick we will have to be to stop posting here on BC.org It scares me.  I keep dwelling on those that can't even type in order to communicate with us, and wonder when that will happen to me.  Right now we can all still joke and make plans and basically deal with it all,, but my fear is when death comes so close that I feel its breath... that I'll freak.  Right now I thought I was accepting it all but I think deep down I'm still hiding my head. Could that be true?

  • NYCarol
    NYCarol Member Posts: 347
    edited April 2009

    My Mom had serious lung problems when she died.  When she seemed to have trouble breathing that last day before her death, the hospice workers put her on oxygen.  She was breathing easy when she died. 

    I have lung mets also and will request that my family make sure I am on oxygen when the end comes.  I don't want to suffocate either.  I get short of breath now sometimes, and it really is so scary.

  • Analemma
    Analemma Member Posts: 1,622
    edited April 2009

    Lynn, your questions made my think of JoAnne, and so looked back at her posts, almost exactly a year ago.  She last posted on the board on March 8, and then her brother came on and posted updates.  She died on March 19. Her blog is still online, and everytime I go back and read her posts I am comforted.

    http://joannes-blog.blogspot.com/2008/03/fare-thee-well-love.html

    She had a way of always saying the right thing, of keeping the right perspective.  A gentle lady, and so smart!

  • EWB
    EWB Member Posts: 2,927
    edited April 2009

    Its not the dying that concerns me, its what happens leading up to that moment that I wonder about.

  • ElaineD
    ElaineD Member Posts: 2,265
    edited April 2009

    I agree-at the moment, I'm as reconciled as I can be to the knowledge that my life won't be as long as I had hoped. But the final weeks/days/hours scare me-how much will we be aware of etc. Obviously we have no way of knowing, other than what we have witnessed-but the thought of my loved ones suffering makes me hope that the final phase will be very quick indeed. I  joke that my OH can always make me feel better (and he can, if only emotionally-but he sometimes comes up with some good ideas to help with the physical symptoms too!). When I said this a few days ago, the pain on his face was raw-without asking, I just knew that he was thinking, "but one day I won't be able to help...."

  • EWB
    EWB Member Posts: 2,927
    edited April 2009

    I think that is my dh's biggest fear.

  • MJLToday
    MJLToday Member Posts: 2,068
    edited April 2009

    Just wanted to say thank you for everyone for posting on this thread.

    While I hope I'm at the beginning of my mets journey, I having been thinking & worrying about many of the things you are all talking about.  Thanks again.

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited April 2009

    According to my therapist, the use of oxygen and morphine will help along a peaceful death.  The caring voices of loved ones will help too.

    Morphine dampens down panic.  With oxygen, the need to breath is slowed down. 

    On that note, please have someone ready to come on line and TELL us.  Prayers will be said and friends will want to know.

  • LynnW
    LynnW Member Posts: 191
    edited April 2009

    I'll remember to stock up on oxygen and morphine, dreamwriter. Thanks for sharing that info.   I've told my family doc,, that I want everything and lots of it. I'd rather be out of it,, than to see all my family and friends faces and tears. We haven't actually had "the talk" yet though.  

    I visited a site that was posted above about JoAnne who passed away last year. What I can't beleive is that she was posting one day and a month later,, she had died.  Thats only 4 weeks.  I think I've been trying to convince myself that this will take much longer than reality is showing me. 

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited April 2009

    Actually the good thing is that in Canada, the government will handle the cost of morphine and oxygen.  I was a room-mate with a lovely woman who passed away in this matter.  She was calm and appeared to be in no pain.  Her family all around her.  So nice.

  • saint
    saint Member Posts: 1,877
    edited April 2009

    Hugs All! We all share the same fears. I have always feared drowning...but having experienced sleep apnea I also fear suffocation.........I fully trust that Hospice makes it peaceful & gentle...

    I also believe WE have more control over the time frame than we realize......If family releases you I think it can be quick; if they cling it takes longer. I truly believe that in the same way we can beat the odds & live longer than expected; we can also DECIDE to make a quick exit! That's my plan.......

    BTW----I KNOW dh will be sure to call some of my sisters here & they will post the news of my passing....he knows that is important to me. 

    Be well & stay strong 

  • KLynn
    KLynn Member Posts: 1,407
    edited April 2009

    Facing the future hmmmmmm...

    having one of those days  today..

    You all know those days.... the ones when you realize all the stupid things we do and worry about..and then realize that it all seems so useless and unnecessary,to worry, to do the things we thought were important, that it  just wouldn't matter if  it gets done  if we weren't here tomorrow....

    Sorry ladies, but the death of one of our sisters here, who just looked great 3 months ago, has really made me think all day, about dying, about life, about worrying, about everything... I think most days we just push it to the back of our minds and go on about or business.. work, food shopping, chores in general...Even though it is always there once you are dx,and it is ALWAYS there when you are re-dx again..But with each loss of another friend here it just seems to hit you right between the eyes again...I hate this disease, I hate what it does to our bodies, I hate what it does to our families and children, and I hate the fact that every day more and more women are dxed, without a cure....Women are dying younger and younger... 

    Sorry ladies, I'm usually very positive..not today... Today I am sad...and mad...

    I'm going to bed.....I'll get up and face the future------- tomorrow...sigh...

    Hugs everyone..KLynn.

  • ranD
    ranD Member Posts: 373
    edited April 2009

    Having one of those days as well.  Since I have lung mets, suffocation always  comes to mind.  Last week I had to have my 17 yo call 911 because I couldn;t catch my breath.  That is not what a 17 yo should worry about.  That's why I hate this disease.  Today I have been spending the day thinking about letters to the kids.  I have put them off for awhile and don;t want to not do it.  Its hard not to  I do it.  Anyone else have that problem.  I don;t think i am close to dying, but every time I need to have my lung drained scares me more as if the time is getting closer and then I worry about all of this and the effect on my family.

    I know that my faith has been carrying me thru, but today, I feel more alone.  Yup, I know He hears our prayers, but why would mine be any more important then the thousands of other moms who don;t want to leave their kids.

    So, now what, walk around the house crying?  Its a tough day...sigh...randie

  • ElaineD
    ElaineD Member Posts: 2,265
    edited April 2009

    Lyn and Randie-sorry to hear that you're both having bad times at the moment. It can be overwhelming and strike us unexpectedly-we can be crusing along just fine, and then something shakes us to the core, and reminds us of our limited morality. Am proud of your son for coping so well Randie-but as you said, how we wish our kids didn't have to deal with this I feel exactly the same, and my babies are that bit older....24/22, but it still breaks my heart to have them worry. Hugs to you both,xx

  • saint
    saint Member Posts: 1,877
    edited April 2009

    Hugs all--yep--this sux! As my dh would say, "Some days you eat the bear..some days the bear eats you!" We can just substitute "beast" for bear..........I HATE loosing a sister here...

    BUT......each day brings something new.....I pray today is better for each of us & that we find the strength we need to face whatever comess........

    We can't know the outcome, but I believe my kids part in my disease will make them better human beings than many of their peers--I believe it IS part of being a family to care & worry for each other---just sux to know we can be the cause of so much worry!

    HUGS=be well & stay strong 

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited April 2009

    I have thought about the statement my therapist gave me.... my life is complete, just not finished.  How could I ever feel complete.  Sure my husband and children and grandson give me a sense of completion.  I have left a legacy that now spans 2 generations.  I have never found the mother I have needed all of my life.  In that area, I have to accept that I am not complete.  I dont think that issue will ever be completed.  I have more to do now than I had when I was working.  And I sleep more than ever.  I dont think I can ever get to completion.  A sense of peace that I have done all that I could do.  And when it is over, there is no time to finding the missing pieces.  I do know my self worth lies in friendships.  And I am grateful for that.  And I am grateful to all here who call me their friend.

  • EWB
    EWB Member Posts: 2,927
    edited April 2009

    My husband's mother was quite ill for many yrs- mental illness, cancer, lots of stuff. No its not fair and not what you want your children to see and have to deal with. How ever, the gift in this was that he was 13 when she was dxed and 19 when she died. My children were 15 and 18 when I was dxed. What a gift it has been because he GETS it, and understands it from their point of view. He has been great with the children...when to talk, when not to, what to watch for. I believe it has made it easier for the children, because of what he went thru.

    He is an attorney (malpractice) and has taken many med school courses/seminars etc so he understands the medicine. It use to drive me crazy--he would be so paranoid regarding docs. What a gift it has been since my dx- he understood what was being said, what the options were/are. Often we would talk after appointments and he would decode the meetings, answered questions that come to mind afterwards etc.

    When you sit back and look at things, ponder things that have happened..its amazing what comes up. The people you've met, things you went thru (or others) and how they all come into play now.  Things I can't control, yet some how work out for the best, maybe not now but at some time. Things the children are dealing with shape who they will become, the understanding of life, how they view things. Maybe not now, but the experiences we have will become helpful, useful, something good some where down the road.  Maybe not for us, but for someone we meet, maybe not in our life time, but in our childrens, or grandchildrens. The plan or pattern of life. I am so saddened when I hear of another sister who has died, I am also so grateful for the time I've had to chat with them, or read their posts. A little piece of each of these ladies are now a part of me...what a gift! And none of that would happen had I not been dx w/ stage 4 breast cancer. It was not part of my plan, but it has forced me to really slow down, to really see the world in all its glory and gore, reminded me that I am only human, to remind me of humility, to really look at what I do and say to others. To be reminded that I do not control the world or even much in my life and that is ok, to look at what I can control and think carefully about what I do with it.

    Not sure where I started, so sorry for the ramble, its one of those days. Saint and Dream, and others, I pray that you all find the place of peace and calm and comfort. I am grateful for the little pieces you have all shared with me and the pieces I keep from each of you.

    Elaine

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Dear sisters,
    May I join this group?  I just found out I have some whacko gene that is going to keep on giving me cancer.  I am now a 3 timer.  I had ovarian (Stage 0), breast, and now colon. 

    It's time for me to face things.  May I join you? 

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited April 2009

    Welcome whoopsiedoodles

    I am so so sorry that you qualify.

    I do have a question.  You had ovarian cancer first.  Could the breast cancer and colon cancers be mets?

    Why do you think you need to face things.  You may be doing things for the third time but you may return to NED.  And when you do, I will do the happy dance for you.  Which wacko gene are you talking about brca1 and brca2?

    Regardless, feel free to jump right in ..... lean on someone or let someone lean on you.

  • Analemma
    Analemma Member Posts: 1,622
    edited April 2009

    Whoopsie,

    Welcome.  We're all going to die, whether sooner or later.  I'd rather feel like I was as prepared as I could get, even if I live another 35 years!  I just hate loose ends.

    Brenda

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    I agree about the loose ends. 

    Dreamwriter, I totally have no idea what gene it is, it isn't brca1 or brca2 (negative for that one). 

    Ovarian was stage "O,"  the cells were labeled "borderline malignant." 

    I was curious about mets, too.  I asked, and the docs have told me that these are all seperate occurences.  

    How wrong.  How very, very wrong. 

    I know we will all die soon, and of course none of us want to.  

    I just feel like now that I am a 3-timer, how much more can my body take!??!?!?!?!?

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited April 2009

    Whoopsiedoodles:

    Thank you for answering my questions.  I am hoping that you return to NED, as if the treatment works you have the ability to do so.  I know the feeling about how much more can my body take.  When I started this journey I was put on FEC and it didnt work, then they put me on taxotere... after 18 of those, I thought I was mutating.  My nails were black and stinky.  My skin was grey and I was ready to call it off.  Then my reports came in - stable.  And the treatment went to zero.  All of a sudden, I didnt see doctors and nurses - nothing.  I have enjoyed 2 yrs of stable.  And so it spread....again.  Nasty thing.  But after being stable... I want nothing more than to return to that.

    The point which I probably didnt get to was that there is always hope.  It takes different forms and you may not know it as such until it is gone.  I am hoping with you that they can return you to NED and you have a long and happy life without more cancer.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Dream-you have a very calming way about you.  Thank you! 

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited April 2009

    Whoopsidoodles - You're welcome.

    Everyone:

    What do you do when people start pushing "cure alls" at you.  I have a person in my writing group who asked me about taking this alternative medicine called Immunical.  It is supposed to bolster your own immunity system at the cellular level.  She asked if I had asked my doctor about it.  And I told her that we are not changing my treatment at this time.  And she got a little offended.  Then she handed me a video still shrink wrapped and asked me to watch it.  I did but it didnt make me all ga-ga to take the stuff.  I have to give her back the video on Thursday.  And I dont want to argue.... will tell you how it goes.

  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited April 2009

    Good question. I get this a lot.

Categories