After the "well, we can prolong your life" talk

lesvanb
lesvanb Member Posts: 905
edited March 2014 in Colorectal Cancer #1
how do you all keep on thriving? Yes, I have strategies too, but needing more to hear some friendly voices tonight.

all the best, Leslie
«1

Comments

  • Nana2
    Nana2 Member Posts: 255
    Leslie, I'm so sorry you are
    Leslie, I'm so sorry you are struggling. I wish there was something I could say to help, but I know sometimes words just aren't enough. I feel for you and I will pray for you. We're here for you.
    ((((HUGS)))
    April
  • Kerry S
    Kerry S Member Posts: 606 Member
    There is something I need to tell you
    Leslie,

    Darlin I am also sending some of my spunk to you to. As long as they prolong your life to that of an old old woman, I can deal with that. I think it is time to get that second opinion. Let’s get a new damn plan.

    There is something I need to tell you. Horses don’t like me. If I get near one, they bite me or try to step on me. The last time I was on one, it first tried to rub my leg on bob wire. It then took me under a low tree branch to try to scrape me off its back.

    I think horses know they scare the hell out of me. They then think they have all the power.
    I think cancer is the same as the damned horses. If we think they got us, they got us.

    Kerry

    PS we have too many fields to brush hog yet.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Leslie
    For me the issue of a cancer diagnosis is quality of life versus quantity, but then I am 63 years old so I already have a lot of years on my ticket.

    I have found that I treat myself differently. I no longer put things I want to do off to some distant future time. I treat myself to the small pleasures in life.

    I look for the things that will make me smile.

    And it isn't all about "me" either. I enjoy doing some charity work for premi babies. I go out of my way to smile even at strangers when I am out and about.

    For sure the 'I wonder if I will get to do that again" comes to mind, but I push myself to assume that I will.

    Live every day to its fullest, and always believe there is a tomorrow.

    Hugs,

    Marie who loves kitties
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Not Thrivin' - But Still Survivin'
    Let's start with a friendly voice from the Lone Star State - Texas:)

    Hi, Leslie:)

    It's simple really - we just get up everyday and do the best we can with what we've been given. No small task for any of us - we all undergo so much on each day that we've been provided.

    My 3rd recurrene has had alot of hills and valleys - the last 6 months have tested me and stretched me all kind of ways - it has also helped me to know that what I talk about with all of you, is what I've done myself.

    I'm never afraid to "sit down in the mud with you."

    I've got a very good medical team here in Texas, Leslie...our cancer center was just upgraded to NCI status - so we're as good as M.D. Anderson. I trust my DaVinci surgeon with my life - he's not failed me and we've been around the bush twice now.

    Know things seem hollow at the moment - but you live in a great part of the country - you see things that I could only imagine or dream about.

    Just "hitch your trailer to my wagon" and hang on - sharp curves ahead but I'm an experienced driver, LOL:)

    This past radiation treatments combined with the pump and then followed up with Folfiri has knocked me down like nobody's business - I've been off the board recuperating and trying to feel somewhat human before the holidays get here....I think I'll get a glimpse of what that feels like and will enjoy any moments I can get, because the last two months have punished me physically - and crippled me emotionally. I've just been so sick this time that I wonder how much longer can I go?

    But the storm will pass - I just break it off one day at a time, sometimes down to 1-hour at a time. I want to feel good a couple of days before I do my next infusion, right after Christmas, I pushed back a week to have a chance.

    In looking at life this year, it finally boils down to 4 simple things that I want for the holidays this year...

    1. My good friends here at CSN.
    2. The lightbulbs and utilities kept on.
    3. A nice holiday dinner.
    4. To feel good so that I can see the light at the end of this tunnel and keep fighting.

    If we all had only ONE WISH, I know it would be for our health and the health of our family friends, but aside from that, it comes down to the simple pleasures of life.

    We know we are not guaranteed tomorrow - somedays this is easier to swallow than other days...so I always look at the holiday as the year end round up - and always think that this holiday could be my last one - it is so very hard to make it a full year and know that you will be there, just too many unpredictable things. I've spent much time in the hospitals and/or sick around the holidays for the past several years.

    It's always a time for reflection for me as well - all too well my medical team threw in the towel on me in 2007 and said I'd never see another Christmas....and this week that will be 3 more years of holidays that I was never to see.

    Who knows? I sure don't...what do I know anyway? I celebrate with each of you around the world and there will be parts of all of you at my table this year - and I hope that you think of me that way too.

    Santa Craig says, "Put in your CD and try and put your fears on hold for a couple of weeks...2011 will find many of us still in the fight...but since we can't change the world in just a few days...let us just sit back and soak up the good things that we can experience this year and worry about next year - next year!

    All my love to you, darlin'

    Ride On!

    -Craig
  • lesvanb
    lesvanb Member Posts: 905
    Nana2 said:

    Leslie, I'm so sorry you are
    Leslie, I'm so sorry you are struggling. I wish there was something I could say to help, but I know sometimes words just aren't enough. I feel for you and I will pray for you. We're here for you.
    ((((HUGS)))
    April

    thank you April
    your hugs are keeping me warm tonight.

    (((hugs)))

    Leslie
  • lesvanb
    lesvanb Member Posts: 905
    Kerry S said:

    There is something I need to tell you
    Leslie,

    Darlin I am also sending some of my spunk to you to. As long as they prolong your life to that of an old old woman, I can deal with that. I think it is time to get that second opinion. Let’s get a new damn plan.

    There is something I need to tell you. Horses don’t like me. If I get near one, they bite me or try to step on me. The last time I was on one, it first tried to rub my leg on bob wire. It then took me under a low tree branch to try to scrape me off its back.

    I think horses know they scare the hell out of me. They then think they have all the power.
    I think cancer is the same as the damned horses. If we think they got us, they got us.

    Kerry

    PS we have too many fields to brush hog yet.

    Of course Kerry if you call a horse an it
    the horse will do that to you, and your meaning of course was not lost on me when here I was calling cancer "it". Your note got a guffaw from me and it was just what I needed. I do know I've got a serious case of the blues right now, having the flu doesn't help either. And it's not like I haven't been riding this buckin' bronco for awhile neither. Just a person gets tired sometimes. Thanks for showing me where to get some rest so I can use that spunk you sent me.

    and how did you know I was looking at the brush-hogged ski trails fondly this afternoon so clearly marked with the white snow between the sage?

    love to ya buddy,
    Leslie
  • lesvanb
    lesvanb Member Posts: 905

    Dear Leslie
    For me the issue of a cancer diagnosis is quality of life versus quantity, but then I am 63 years old so I already have a lot of years on my ticket.

    I have found that I treat myself differently. I no longer put things I want to do off to some distant future time. I treat myself to the small pleasures in life.

    I look for the things that will make me smile.

    And it isn't all about "me" either. I enjoy doing some charity work for premi babies. I go out of my way to smile even at strangers when I am out and about.

    For sure the 'I wonder if I will get to do that again" comes to mind, but I push myself to assume that I will.

    Live every day to its fullest, and always believe there is a tomorrow.

    Hugs,

    Marie who loves kitties

    Marie
    thanks for the reminders why we live each day fully regardless. I had forgotten this one I "look for the things that will make me smile" when of course there are many things that can make me smile each day.

    love to you, Leslie
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Hi Leslie
    I am so sorry you had to hear that. The truth is, they dob't know; as Kerry says if they can prolong it until you are a VERY old woman, that's okay. There seems to be a lot of people on this board + others who have mets to the lungs +/or liver and are doing pretty well. Leslie, I am totally thinking about you + I am so sorry you have this to deal with. Remember, you are feeling really strong physically. One time when I was at my oncs, I started asking a lot of questions about a CT scan. My onc said, "How are you feeling? These are just words on a piece of paper". Sometimes when I feel down I remind myself of those words. Take good care!
  • lesvanb
    lesvanb Member Posts: 905
    Sundanceh said:

    Not Thrivin' - But Still Survivin'
    Let's start with a friendly voice from the Lone Star State - Texas:)

    Hi, Leslie:)

    It's simple really - we just get up everyday and do the best we can with what we've been given. No small task for any of us - we all undergo so much on each day that we've been provided.

    My 3rd recurrene has had alot of hills and valleys - the last 6 months have tested me and stretched me all kind of ways - it has also helped me to know that what I talk about with all of you, is what I've done myself.

    I'm never afraid to "sit down in the mud with you."

    I've got a very good medical team here in Texas, Leslie...our cancer center was just upgraded to NCI status - so we're as good as M.D. Anderson. I trust my DaVinci surgeon with my life - he's not failed me and we've been around the bush twice now.

    Know things seem hollow at the moment - but you live in a great part of the country - you see things that I could only imagine or dream about.

    Just "hitch your trailer to my wagon" and hang on - sharp curves ahead but I'm an experienced driver, LOL:)

    This past radiation treatments combined with the pump and then followed up with Folfiri has knocked me down like nobody's business - I've been off the board recuperating and trying to feel somewhat human before the holidays get here....I think I'll get a glimpse of what that feels like and will enjoy any moments I can get, because the last two months have punished me physically - and crippled me emotionally. I've just been so sick this time that I wonder how much longer can I go?

    But the storm will pass - I just break it off one day at a time, sometimes down to 1-hour at a time. I want to feel good a couple of days before I do my next infusion, right after Christmas, I pushed back a week to have a chance.

    In looking at life this year, it finally boils down to 4 simple things that I want for the holidays this year...

    1. My good friends here at CSN.
    2. The lightbulbs and utilities kept on.
    3. A nice holiday dinner.
    4. To feel good so that I can see the light at the end of this tunnel and keep fighting.

    If we all had only ONE WISH, I know it would be for our health and the health of our family friends, but aside from that, it comes down to the simple pleasures of life.

    We know we are not guaranteed tomorrow - somedays this is easier to swallow than other days...so I always look at the holiday as the year end round up - and always think that this holiday could be my last one - it is so very hard to make it a full year and know that you will be there, just too many unpredictable things. I've spent much time in the hospitals and/or sick around the holidays for the past several years.

    It's always a time for reflection for me as well - all too well my medical team threw in the towel on me in 2007 and said I'd never see another Christmas....and this week that will be 3 more years of holidays that I was never to see.

    Who knows? I sure don't...what do I know anyway? I celebrate with each of you around the world and there will be parts of all of you at my table this year - and I hope that you think of me that way too.

    Santa Craig says, "Put in your CD and try and put your fears on hold for a couple of weeks...2011 will find many of us still in the fight...but since we can't change the world in just a few days...let us just sit back and soak up the good things that we can experience this year and worry about next year - next year!

    All my love to you, darlin'

    Ride On!

    -Craig

    I'm never afraid to "sit down in the mud with you."
    My dear Craig, who would've thought sittin' together in mud could feel so good. Gosh darn if it if that doesn't bring tears to my eyes. Thanks for your wise council again. I really liked your ONE WISH and the aside from that.

    It's interesting; I was holding it together until Saturday (came down with the flu Saturday too) but part of it was having everyone appreciating my attitude, and what I had written on my update, and how I was a good example yahdayahda....but, (and perhaps this should be in maglets thread "are you ever lonely") did they actually see me, feel me? Yet, do people commonly ever see you or feel you, and you know it for the gift it is when it happens. One of my good friends wrote to me today when I acknowledged feelin' the blues, she asked "what would my zen teacher say?" Well I wrote back that she would say that she had never met a Buddha, a few were close, but mostly just fellow humans. Sometimes I feel like I have to be the perfect patient, not show the flaws of weakness or fatigue and yet I do know that when I am open and not buried in the sand, that gift of connecting with someone else is more likely to happen.

    I so appreciate you writing to me tonight. It is the bestest, earliest Christmas present I've ever gotten. Here's to many more Christmas exchanges between us, my dear.

    From the beautiful Wyoming landscape just a few miles from the foothills of the Wind River Rocky Mtns..

    love to you,
    Leslie
  • lesvanb
    lesvanb Member Posts: 905
    AnneCan said:

    Hi Leslie
    I am so sorry you had to hear that. The truth is, they dob't know; as Kerry says if they can prolong it until you are a VERY old woman, that's okay. There seems to be a lot of people on this board + others who have mets to the lungs +/or liver and are doing pretty well. Leslie, I am totally thinking about you + I am so sorry you have this to deal with. Remember, you are feeling really strong physically. One time when I was at my oncs, I started asking a lot of questions about a CT scan. My onc said, "How are you feeling? These are just words on a piece of paper". Sometimes when I feel down I remind myself of those words. Take good care!

    Anne
    Oh thanks so much for that one "How are you feeling?" Yes, I am feeling well! Heck I've been able to take care of hubby who's got the flu worse than me. Right now all's right with my world.

    love to you
    Leslie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    lesvanb said:

    Anne
    Oh thanks so much for that one "How are you feeling?" Yes, I am feeling well! Heck I've been able to take care of hubby who's got the flu worse than me. Right now all's right with my world.

    love to you
    Leslie

    Hey Les!
    I have quoted this quote before but it is something I always tell myself when I am feeling down..... and it reassures me. This is from a song by my favorite rapper - T.I.

    "The old me is dead and gone...... but the NEW me is gonna be alright!" So will you Les! Take care my friend.

    Jennie
  • lisa42
    lisa42 Member Posts: 3,625 Member
    dear Leslie
    Hi Leslie,

    It sure does get hard sometimes, doesn't it- we just need a boost back up from someone else who has been there "in the mud", as was so eloquently already said.
    I feel your pain, girlfriend- I found myself quite down this past week too, just pondering all the possibilities of my life from here forward.
    Maybe you do need a new perspective from a different onc- something to consider.
    You'll keep looking forward and picking yourself up again because it's what you have to do!

    By the way, I just fell in love with Wyoming when I was there for the first time 2-1/2 years ago. My husband's great aunt lives in Dubois and the Wind River Valley is a beautiful place! Just thinking about that beautiful landscape cheers me up- you live in God's country- that's how I think about it- still so open and free!

    Hugs to you tonight Leslie-
    Lisa
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Leslie
    Leslie,
    All I can say is I am thinking of you and holding you in my prayers. I hope you and your husband are feeling better soon and you can move toward a plan that gives you peace.

    Aloha,
    Kathleen
  • abrub
    abrub Member Posts: 2,174 Member
    I was given that line by one of my docs
    Actually he said "Median life expectancy is 2 years, but I think I can get you 3-5". I fired him, and have drs that are in it with me for the long term. At 3 1/2 years out, I'm healthy, and plan to thumb my nose at said dr on my 60th birthday (the 5 year mark.) I also have plans to go to my onc's son's wedding, and my onc agrees. His son is now 3, and we're in no hurry!

    This whole cancer bit mucks with the mind. We all have good days and bad. Know that at least here you have people who truly understand your fears and frustrations. We all share them.

    Sending hugs your way,
    Alice
  • maglets
    maglets Member Posts: 2,576 Member
    abrub said:

    I was given that line by one of my docs
    Actually he said "Median life expectancy is 2 years, but I think I can get you 3-5". I fired him, and have drs that are in it with me for the long term. At 3 1/2 years out, I'm healthy, and plan to thumb my nose at said dr on my 60th birthday (the 5 year mark.) I also have plans to go to my onc's son's wedding, and my onc agrees. His son is now 3, and we're in no hurry!

    This whole cancer bit mucks with the mind. We all have good days and bad. Know that at least here you have people who truly understand your fears and frustrations. We all share them.

    Sending hugs your way,
    Alice

    les
    Leslie I have had hte you have 6 months line.....no promises to prolong....

    don't listen darlin.....just keep trudgin along with the rest of us. Up every day....hopefully out and about, something good to eat...a little exercise and sometimes maybe just a glimmer of joy....getting harder to find but still there.

    sending you best wishes and hugs

    mags
  • coolvdub
    coolvdub Member Posts: 408 Member
    maglets said:

    les
    Leslie I have had hte you have 6 months line.....no promises to prolong....

    don't listen darlin.....just keep trudgin along with the rest of us. Up every day....hopefully out and about, something good to eat...a little exercise and sometimes maybe just a glimmer of joy....getting harder to find but still there.

    sending you best wishes and hugs

    mags

    It's been said before
    Leslie,

    There is no expiration date on our foreheads. I'm so sorry you doctor doesn't understand this. If you are feeling reasonably well, that is good. Just take each new day as a blessing,hard to do some days, but a positive attitude can do wonders for you.

    Sorry you and your husband are down with the flu, I'm at home fighting a cold that as been going around at work. It's actually nice to just be feeling sick from a cold versus the cancer, words I never thought about saying before. I will be praying for you to find the strength to fight on and the knowledge to win this fight. Happy Holidays to you and yours.

    Don
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    leslie just strive to thrive. I love ryming and wish I could spe
    I am strangley glad you heard one doctors honest opinion. Of course I wish like hell it was "we can prolong your life until 150 years" tell the doctor if he can get you close to that age he can have your horse in the photo. it might work.

    We all need to the score, I don't want it withheld or watered down either.

    Get a few others is possible. Tell them you are looking for HOPE. has anyone seen her ?

    Say if tomorrows your last day and you spend it down in the dumps. what a waste.
    Get some warm and wonderful real and virtual friends and fill your life with Joy.

    Its Xmas after all. Pray for a miracle and at least ask the universe for help.
    If I get tested by the same sort of news I hope I have the courage to honest with my feelings like you were. By breaking the ice you really have helped many others contemplate a confronting message and senario.

    Pete
  • snommintj
    snommintj Member Posts: 601
    coolvdub said:

    It's been said before
    Leslie,

    There is no expiration date on our foreheads. I'm so sorry you doctor doesn't understand this. If you are feeling reasonably well, that is good. Just take each new day as a blessing,hard to do some days, but a positive attitude can do wonders for you.

    Sorry you and your husband are down with the flu, I'm at home fighting a cold that as been going around at work. It's actually nice to just be feeling sick from a cold versus the cancer, words I never thought about saying before. I will be praying for you to find the strength to fight on and the knowledge to win this fight. Happy Holidays to you and yours.

    Don

    Buying time
    A lot can change in just a few months. Buy as much time as you can. The drs gave me 2 months at diagnosis (mar 08) then they gave me 30 days in Aug (09). During my infection days when I kept getting septic the drs called my family in from out of town and said my death was imminent with maybe 6 hours left. I reached a point where I simply couldn't breathe anymore, it was to hard and painful and wasn't doing me any good when I did. So I said goodbye to my wife and little boy and gave up. I really thought I would die and at that moment became completely cool with the idea. I guess I blacked out. I woke up some 12 hours later feeling better and in a much better emotional state. Death is no longer a burden that weighs on me. In my condition death is the easy way out and the one everyone expects me to take. They may be right, but I'm going to take advantage of every new treatment that comes along. I never know when the next clever idea will come along and buy me another 6-12 months. Right now they seem to be coming along every 6-12 months and that is just fine with me.
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    Leslie
    Leslie, I hope today that you are feeling good and that the friendly voices helped comfort you.I don't really like to use all of the common platitudes so....{{{Hugs}}}from me to you.

    -Pat
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    coolvdub said:

    It's been said before
    Leslie,

    There is no expiration date on our foreheads. I'm so sorry you doctor doesn't understand this. If you are feeling reasonably well, that is good. Just take each new day as a blessing,hard to do some days, but a positive attitude can do wonders for you.

    Sorry you and your husband are down with the flu, I'm at home fighting a cold that as been going around at work. It's actually nice to just be feeling sick from a cold versus the cancer, words I never thought about saying before. I will be praying for you to find the strength to fight on and the knowledge to win this fight. Happy Holidays to you and yours.

    Don

    Hey Leslie have my best and sincere hugs from here! I'm
    sure you will be with us for many ,many ,many years, until you become a very very very very old scary woman!
    Again Hugs my dearest friend!.