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

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

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

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

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

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

your hugs are keeping me warm tonight.

(((hugs)))

Leslie

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

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.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

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

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

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

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

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

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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's picture
lesvanb
Posts: 911
Joined: May 2008

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

AnneCan
Posts: 3692
Joined: Oct 2009

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's picture
lesvanb
Posts: 911
Joined: May 2008

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's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

"The old me is dead and gone...... but the NEW me is gonna be alright!"

ah the potential for my growing repertoire of country western songs!

love to you Jennie, Leslie

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

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

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

"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."

I'm so fortunate to know you Lisa.

Season's tidings from Wyoming; nice to know you knwo what this part of the country looks like.

love, Leslie

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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's picture
abrub
Posts: 2131
Joined: Mar 2010

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's picture
maglets
Posts: 2596
Joined: Jun 2006

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's picture
coolvdub
Posts: 410
Joined: Aug 2009

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

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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!.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Ay querido! Este sentimiento mio pasará con la ayuda de las/los amigas/amigos como tu.

((((abrazos))))

Leslie

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

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.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Your straightforward, can do, and caring attitude always is a driver for me. Last week when I asked about Caris testing my tumor, my oncologist asked where I had heard about that. I just said I get around. Thanks always for the ideas, and the support.

all the best, Leslie

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Thanks so much for your heartfelt words. How wonderful to have you have my back.

Happy holidays to you all too!
Leslie

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

"don't listen darlin" It is about following our own heart isn't it?

from my porch to yours,
Leslie

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

"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."

Amen to that Alice

all the best, Leslie

PS am consulting with different oncs

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

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

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

"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."

Thanks for the boost Pete!

all the best, Leslie

I love your dive photo. Where are you? I've dove in the Sea of Cortez.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Hi Leslie,

Its warming to get feedback on my comments.

The photo is from Christmas Island when I went in an underwater photography competition.

I got back from that trip and I got diagnosed a few weeks later.

Bummer, I am going through my childish passionate phase at present.

My passion is photography, what 's yours ?

I think using/finding your passion during this sutle battle with cancer is really helpful.

cheers,

Pete

Jaylo969
Posts: 827
Joined: Jan 2010

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

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

((((hugs))) to you too. Aren't hugs great!

all the best, Leslie

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

Those are some pretty sobbering words. Did you ever think about getting a second opinion. With all the new trials out there, a statement like that shouldn't even be allowed. Hope your flue gets better too. Praying for you.

Kim

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

always such a comfort to hear your care, your wisdom, and strength.

Christmas blessings to you!
Leslie

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

I think plenty of us have heard that line in some combination or another. All you can do is keep fighting and keep trusting and believing. No one can predict what the outcome will be for any of us...all doctors can do is give you their best guess based on past stats. But you are an individual...a survivor. Keep you spirits high and fight on!

-Sheri

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

"All you can do is keep fighting and keep trusting and believing."

These words are a gift. Thank you because they get at the root of it for me right now, especially the trusting and believing. Thanks for sharing this with me, Sheri.

all the best, Leslie

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

The doctors are not always right. I've heard and read (on here) many stories of being given a certain amount of time and then living years past that. There is absolutely no reason why you can't be one of those stories too.
-phil

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

sending hugs and love your way from across the pond.

Sonia

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