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Dealing with a Timeline

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Hi there! Any advice on how to emotionally deal with it when your doctor finally gives you an estimated amount of time left?

I know to get papers in order and all of that but how do I stop hearing the doctors death sentence every morning when I wake up. I don't want to waste my time worrying and being scared but I don't know how to stop. One more thing that cancer has robbed me of - my positive outlook.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

It does never hurt to have things ready, cancer or no cancer, when there are others in your life. Doctors are not always right as you know. Did you get other opinions on your situation? Have you looked into Erbitux and Irinotecan at all? I've had multiple tumors in my lungs since day 1 (Feb 2004) Bunches were removed during wedge resections, others for the past 4 years have been RFAs.

If everything has been exhausted (including you) then try to do things you want to do. Are you feeling well otherwise? I know I say this all the time but there is no guarantee that you will die of cancer. Everyday, thousands of Americans leave home and die from accidents of various types. That scenario plays out all over the world. Lions eat people in many countries. Rockslides take people out. Something falls off a truck and can kill you.

I am sure if I heard similar news it would take me some time to adjust and accept things. I'd try to enjoy myself as much as I can as long as I felt well. You're a strong woman. Like you said, you don't want to waste your time worrying. That's still something you have control over...
hugs
-phil

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Hi, everyone!

Thank you for responding to me. Your words mean so much to me. I often find it hard to come to the board and hear the sad stories and here I am, burdening everyone with my whining. I get it now. This is the only place where people have the knowledge and opinions that really matter because they have been there, done that, or at least can relate.

I think Phil wrote on another post to someone how it would be nice if survivors would stay on the board and share their wealth of information. I was one of those people in the past who would get cured (don't roll your eyes John23 - LOL) and then couldn't handle reading a lot of post for the hidden fear of reality of knowing that it could happen to me again. Its like a mental vacation from all of this.

However, from now on, I plan on being on here a lot to share what ever I know. It might not be a lot but at least I will be here.

Thank you everyone!

geotina's picture
geotina
Posts: 2122
Joined: Oct 2009

You are still pretty raw emotionally. Give it time, you never know what may be around the corner. Sometimes docs are right and sometimes they are wrong. If you get stable that can last for a long time.

My George was diagnosed 3/09 and more than likely should not have seen Christmas 09. Well here it is July, 2012. Is his cancer gone, no. Will it likely ever be gone, no. Is he stable, yes. Ups and downs but for the most part quality of life is pretty good. Aim for that, stable and a good quality of life.

I wish you the best - Tina

Lovekitties's picture
Lovekitties
Posts: 3357
Joined: Jan 2010

In another post just a few days ago you were asking about multiple mets to lungs. I take it from this current post your doc has told you no further treatment available.

Have you exhausted all your options? Going to another doc? A national cancer center? Forgive me if you have done all this and I just don't recall it.

As Phil says, no one knows what our true timeline is, even a doc giving his best estimate.

If you feel there are no further medical options, then make yourself two lists. One of the things you must get done and one of the things you want to do. Don't skimp on the size of the 'want to do list'.

Start each day with working on the musts and making firm plans for something from the want to do's. Having positive goals will help keep your mind busy.

All of us will leave this earth one day. I pray that you will find the strenght to live each day to the fullest and find peace of mind.

Hugs,

Marie who loves kitties

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Hi, Marie...

I haven't seen the doctor again. It was when he told me about the 20+ lung mets that he told me that I will never be cured and that at best I have 5 years left but that most do not reach the 5 years. The plan is still to do the chemo starting in August.

I am getting a second and possibly a third opinion because they don't feel it is necessary to biopsy the lungs. Based on the rapid growth and my history they are confident it is cancer. My CEA level is .8 and I feel really good so how did it go so wrong so fast? The lung situation is new to me. It started a couple of months ago with 2 showing up but then quickly multiplied.

Marie, I have always been such a positive person in everything even with the cancer but this time given a timeframe has just destroyed me. I just keep hearing the 5 years or less comment over and over again. I am still trying to grasp for any sign of hope - even reading your first sentence to me - I interpret it as "oh good Marie thinks the 20+ mets are fixable and that I am being dramatic." And oh, Marie, how much I would love for that to be what you are saying... a quick slap to the face to get my thoughts in order. Is that what you meant? Or as with everything these days am I reading too much into it?

And oddly, I know that for cancer patients, 5 years is good and that many would kill to hear 5 years. Its just hard when you look at your 14 year old daughter and wonder will I be there for her Sweet 16 Party, when she gets her braces off, gets married, has a baby. When you look at your high school sweetheart, the man you have loved since you were a teenager and had always planned on growing old with, the one you who still makes your heart skip a beat and not wanting him to be alone.

I really don't think doctors should give you a timeframe. I think when you get to that point of being that sick, when morphine falls into place then you kind of already know. What is the point of tell anyone that? I wouldn't go up to a 90 year old and say well hey you probably have 5 years left.

Lovekitties's picture
Lovekitties
Posts: 3357
Joined: Jan 2010

Well, not really. I guess I was still feeling that the 20+ mets was still doable and that with treatment things could trun better for you.

I agree that for doctors to give a timeframe is often worse than not.

Now as for the 5 years. Well, there is a lot that can happen in 5 years to extend that into a full life. Just look at the recent chatter here about new treatments available in trials and on-market in Europe. I am sure that Pepe would let you come over for a vacation and do the new chemo while you are there! lol

Don't take the doctor's words as carved in stone but don't ignore them either. By that I mean, do lots of hugging on those you love; see the best of every day; and live like you are gonna be around to be a granny many times over.

Rooting for you. And as Winter Marie would tell you...she was given a lot less time and proved them WRONG...now it is your turn to do the same!

Hugs,

Marie who loves kitties

danker
Posts: 1274
Joined: Apr 2012

I don't think doctors should ever give an estimated time of death unless it is in hours. Only God knows when your last day is, and He isn;t telling. Besides, to die and go to heaven is not all that bad a deal! LOL Hang in there and live a day at a time. Good luck.

steved
Posts: 835
Joined: Apr 2004

I remember well my meeting with the doctors when they ultimately told me there was nothing they could do that could cure my illness and I'm sure many here share those memories. I kind of knew it was coming and asked the classic 'how long question' with an estimate of a year or two.

How do you deal with it? There is no one answer but time is the greatest adjuster and considering how big the news is you can't expect yourself to get your head around it immediately. We did nothing with the news for some days and then myself and my wife started to talk about it. we had some of those conversations you always dreaded- the practical ones of money and affairs and the harder ones of how it will affect the family (I have young kids which was the hardest conversation to have) and how we might face the period leading up to it. Each time we talked I hated it and needed a few days to digest but in time it helped enormously to come to terms with the reality of what we faced.

It is also hard to find that balance between accepting this kind of 'terminal' news and retaining some glimmer of hope that a miracle (new treatment, suddden change in illness) might happen. I think each person plays that balance their own way. Some need to cling to hope till the end as it helps keep them positive, others need to pragmatically face death full on and deal with it on a intellectual level. Find your own balance as to how you play this.

Then ultimately once you have started to adjust and get your head around this our thoughts turned to quality. How do I enjoy what ever time is left. The estimates are only that and there will be dozens of stories here of inaccurate estimates of time left. We never really know how much time we have but when we know it is limited our focus must be on quality of life in the time remainng. What do you enjoy, what have you always wanted to do, what memories do you want to leave others close to you? It is in some ways a privelege to be given the chance to focus on this- compare it to the person who dies suddenly in a motor crash with no knowledge it was coming. You have a chance to complete what needs doing- focus on that.

There is no right way to do this. Talk with people who you love and trust to have these conversations with you. Don't bottle the feelings inside- they are the hardest conversations you will ever have but they will help you move to a point where you can start to focus on pleasure and quality again.

We all here have cancer but we are all people just getting on with our lives, however long they are.

steve

Lifeisajourney
Posts: 217
Joined: Apr 2010

but i said no more chemo after a failed liver section..when I took chemo the first time I was strong, by the end of the 7th sessions, I had a toxic reaction, ended up in hospital for 10, DR. said go home and recover..it took a couple months, got better and never felt the same again, neuropthy, weakness, bowel problems, in hospital 2x, then they said mets to liver, went to a ncr hospital for failed liver resection, liver not viable..that was 6/l/11. Told 6 months about without chemo....I still don't feel great, but I am still here. I wake up everyday, with the thought it could be the last, but I have seen a couple people die that were not sick when I started my journey..12/08..dr. said lucky it is a slow gowing tumor, some small things on lung, but no symptoms...I advocate nothing, but believe this is not within our control, why some get better on chemo, I don't know, but a timeline is something I wish no one gave me because when you beat it, it is still in your mind....so that timeline is something that may or may not happen...bless you on your journey no matter what you do, but no one can give us a timeline and be sure...Pat

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

By the way, let me say that I hate timelines as well. Labels can become self fulfilling; and that is wrong. No one knows our fate and should not judge. Quality of life and attitude are, to me, inseparable. I may die of cancer or a car may run a red light and hit me while I am on my motorcycle. Fate is not ours to hold or predict. ((Hugs of Courage))

janderson1964
Posts: 2215
Joined: Oct 2011

It is way too early to panic. Get those second an third opinions first. It seems to me that you still have plenty of options that you havent tried yet like i said in a previous post.

smokeyjoe
Posts: 1428
Joined: Feb 2011

My oncologist told me no cure at my first appointment. He said we could manage this ... or something, after that my head started to spin. I asked my onlcologist approximately how long...he said two years. Can't get that out of my head either. I understand completely where you're coming from.

danker
Posts: 1274
Joined: Apr 2012

Don't listen to such nonsense!!The onc. doesn't kkow when you are going to die any more than I do. They make such statments based on previous experience, But you already know we are all unique, So averages don't count. My favoite average story is the barefoot man standing on a surface with an average temperature of 80 degrees. Doesn't sound bad untill you find out one foot is on a bed of hot coals and the other on a piece of dry ice. Averages can completely mislead us. LOL I think I'm cured and expect to live to 90.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Danker, if no one's said it yet...VERY GLAD YOU ARE ON THIS BOARD!
Tommycat

omrhill
Posts: 125
Joined: May 2012

What a great story. I need to remember that one.

janie1
Posts: 753
Joined: Apr 2011

Good replies here, different perspectives.

What my initial reaction was when your docs gave you a timeline of up to 5 years......i first thought.....5 years is good.....so much can happen in 5 years in new treatments. That's why I was so baffled as to why they would even say that. What?....like crc treatment advancements are going to be stagnant for the next 5 years.?? Doubt it.

Sorry you have to get more opinions, but, heck, there's got to be more encouragement than that. This is sooooo time-consuming, Vicki, but worth it, as you know. We are all at this pretty-much full-time. Lovely.....my new full-time job. For me, I don't know how all this is going to turn out, but I'm doing what I have to, and you will find the strength. This is still very early for you.

I'm glad the liver resection is behind you. I've been reading here for a year, and it "seems like" tumors in the lungs don't grow as fast, and respond better to chemo. While the liver regenerates from surgery, again, it sounds like lung tumors can respond favorably to chemo.

A while ago I was researching TrueBeam radiation treatment for lung tumors. I googled it. I didn't spend a lot of time on it. I think Moffits Cancer Center in Tampa may use that technology (and, I don't know if it is, or, how much better than other radiation) .
I just remember seeing that there had been a clinical trial, I believe, at the Univ. Of Pitts.
Soooo, my point is......there is apparently more going on in the world, than your doctors know to discuss.

As to lung biopsies....there seems to be different thoughts on whether to do them or not. Let us know what your other opinions say about that.
It would be good if they didn't have to do a biopsy, AND, those lung spots were an infection, or virus, or something. It does seem strange that you went from 2 to 20. Anyway, you have to assume it is cancer, and if it is, then HANG IN THERE!!!

(( My husband is in the house-buying mood (we sold ours 3 years ago). I am scared to make any big changes, Blah, Blah, Blah....BUT, as in an earlier post......you have to keep living.....because we may be around much, much, longer than we think we will. ))

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

I just want to thank everyone for your encouraging words and for letting me whine these pass few days. You all have given me hope and are helping me get a better grip on things. You are all so wonderful and I humbly thank you for being there for me. Much love, many prayers and a big hug for each of you!

danker
Posts: 1274
Joined: Apr 2012

Read my response so Smokey Joe. Just live a day at a time and enjoy!!! Even in the+ Lords prayer it asks for our daily bread., not next months or years. Assume you will outlive me and enjoy!!

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Hi there. Great advice and I promise to take it. Thank you for everything. Sweet dreams my friend!

danker
Posts: 1274
Joined: Apr 2012

Read my response so Smokey Joe. Just live a day at a time and enjoy!!! Even in the+ Lords prayer it asks for our daily bread., not next months or years. Assume you will outlive me and enjoy!!

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

When I first read your post, I just didn't know what to say, so I consulted with a friend who has "been there, done that." Ten years ago she had a serious blood infection and even her doctors expected her to die at any time. Her attitude was to say (at the risk of being censored) "I'll be God damned" if she was going to die. It helped her to fight harder and she eventually pulled through. I've adopted that as my fight slogan against cancer and it helps to get me pissed off at the little bugger.

Another thing she advised was developing a holding network of friend and family who will provide you a safe nest of comfort (this board is a nice nest and really the only one that I have.) It should be people who you can talk with no matter how deep the depression or how elating the joy that you feel.

Finally, she echoed what others have already said: none of us know when it's our time, so just shove in as much fun as we possibly can. After all, life isn't about arriving on the other side in a pristine package with all the bows intact. It's about sliding in sideways with a bit of road rash and your hair all messed up, shouting "hot DAMN that was fun!"

Phil64's picture
Phil64
Posts: 837
Joined: Apr 2012

Vicki,

I'm reading your post and the replies to your post. And I’m reflecting on my own predicament as well.

The bible verse says “This is the day the LORD has made; let us rejoice and be glad in it.”

And I can’t help but think that it is so easy for some people (the young and healthy) to rejoice and be glad in this day. But those of us who are burdened with cancer or other afflictions causing physical and mental pain and anguish – well, it’s a lot harder for us to rejoice and be glad in this day.

And yes this day is a blessing from God. We are not promised ten more years, twenty more years.. Even the young and healthy are not promised this. Death can come like a thief in the night to any of us.

So, even though it is sometimes hard for me to choose to rejoice and be glad; that is the choice I aspire to make every day!

Yes, I want to see my children grow, finish school and college, get married… I want to love and spoil my future grandchildren. And I ask God to grant me these things. And yes, I will seek out second and third opinions and make sure I’m getting the best medical help available; hoping that God will work through my health care providers.

But in the end I don’t really know what the master plan is.

So all I can do is Thank God for the blessing of this day! And in spite of the pain and suffering I may have to endure; I still have the choice!

This IS the day the LORD has made; I WILL rejoice and be glad in it! And I WILL love my children and wife and brothers and sisters and friends!

Love and hugs to you.

Philip

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

About a week and a half after my dx, I'd made a comment to a friend that "it's a great day to be alive." After reflecting for a second, I told her "come January when we're getting two feet of snow an hour, it's going to be a great day to be alive." Two years, one month and three days later, I still say those words at least once a day. On my last day, I will say those words, and you are so right: this is the day the Lord has made.

God Bless

Doc

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

If I'm going to keel over in a matter of months, then yes, I would want to know...get my affairs in order and all that. But otherwise, it's better for us to just take it one day at a time, and acknowledge that none of us has an expiration date stamped on his or her forehead. During my last surgery, I worked with a surgeon who had seen a few women with my bizarre tumor type (it's usually uterine, rather than colon), and she said "Wow! I'm not usually sitting here having a conversation about surgery with someone almost three years into this process!". In other words, I should be dead, but here I am...got my first NED scan in March. That could change at any time, of course, but it still goes to show that there is a lot of variation when it comes to the world of averages. There is still reason to have hope. Many hugs coming your way-Ann

taraHK
Posts: 1961
Joined: Aug 2003

I'm in a similar situation -- I recently asked my oncologist -- felt I needed to know, for a variety of reasons. He gave me a frank answer, with the usual caveats about no-one can ever know, and I wasn't to regard this as a "sell-by date" (my words, not his!). The time frame for me was much shorter than 5 years.

I agree it's difficult to hear -- and a little difficult not to obsess. I know it sounds simplistic, but when I am obsessing, I do try t actively shift my thoughts and "count my blessings" - yes, really! OK, I also take Xanax every evening!

It sure does focus the mind. I'm struggling with what to do about work. Everyone seems to think I should go on sick leave or such but I want to keep working -- it gives me some structure and helps me think about something else.

Also, I don't know how long it is since you heard the news but time helps! I'm better now than I was a few days ago.

Agree with what others have said about 5 years -- a lot can happen in 5 years, in terms of advances in treatment ('traditional' and 'nontraditional'). I'm exploring some options now....

Hang in there, darling

Tara

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

Tara, congratulations on the progress with the gemzar, 5FU, oxy. My wife's tumor cells were tested against 5FU, irinotecan, oxy, and gemzar in combinations. All pairs failed and Gem+5FU+Oxy worked so-so, the best combination of conventional chemos. 5FU + vit C + MK4 was hands down best, 5FU + vit C + K3 was #2. I assume her cells had cimetidine because she was getting a *lot* for surgery itself. I had her path slides stained for CA19-9, CSLEX1 and COX2, all positive so she gets cimetidine and many, mostly natural COX2 inhibitors, among the components. The combination is still working 2 yrs later, augmented with beta glucans (PSK, mushroom extracts+WGP). One prime difference is that she has never had immunological erosion from "normal" chemo as she started immunologically first and then this immunochemo.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

The timeline starts when we are born, it ticks away everyday, we can't stop it, but... we don't know when it ends, 1 year, 2 years, 5 years, 90 years??? It is never enough, but it is what we are given.
However... having stated that, the timeline in cancer seems to have an end, the end to me is when they say there is nothing more we can do for you, we need to call hospice. Those words are the only timeline for me. They told me go home, forget chemo, enjoy the life you have left, and I didn't, I said, well... I would kind of like to try the chemo. I did, and here I am.
The clock ticking never ticks the same anyway for anybody, did I just say the timeline ends when hospice is called in??? Well, that's a lie too, because there have been a few that years later have proven that is wrong too.
Am I just a "sunnyside up" person??? NO, I think a few will let you know that I fear everything, and am gently surprised when it doesn't come to happen.
What I am trying to say is, unless you feel like giving up, your time isn't up or close to it. If they tell you nothing MEDICALLY will save you, well, then don't go into heroics with medical crap, but be there as much as you can with physical life, it can last a very long time, until you feel that the end is near, then it isn't per someone else's thoughts or diagnosis.
Keep strong, keep hanging along, keep going on.
Winter Marie

tootsie1's picture
tootsie1
Posts: 5063
Joined: Feb 2008

I'm sorry, and I hope you get your "mojo" back soon. Even if it turns out to be absolutely true that your time is limited, I do hope you will still have some very good days ahead. I hope you will find much to savor and drink in.

*hugs*
Gail

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Thank you everyone for all of the responses. Cannot tell you how many times I have read and re-read them. They mean a lot to me and are a great source of comfort and encouragement. I'm getting a better about ignoring the timeframe comment. I have my moments of ups and downs but I am working on focusing more on the ups and dismissing the downs. I am so glad we have this website to come to for support, answers and just a fellowshp of people going through the same issues.

Much love and big hugs for all!

Vicki

ketziah35
Posts: 1154
Joined: Jun 2010

I don't have much to say except I hope you get a second and third opinion.

TheDirtyColon's picture
TheDirtyColon
Posts: 13
Joined: Jun 2012

Vicki,

I was diagnosed and told I had maybe a 50 percent chance to live 18 to 24 months. Well, it has been only 16 months since diagnosis but the treatment has gone so well they are talking about resection and a long life. When the doctor came out and put his arm around me and said "Oh, John John John, this is not survivable, make your peace" it was definitely a shock. And now it is more of a shock that treatment has gone so well, it's been a wild ride, but I just have to thank Jesus for all he has done for me..

Just hang in there... Doctors give you the generic answer. So there is no telling how long you have, and that could be a very long, and it will be, time!

Keep your head up, Aloha from S. Korea!!!!

TheDirtyColon's picture
TheDirtyColon
Posts: 13
Joined: Jun 2012

Vicki,

I was diagnosed and told I had maybe a 50 percent chance to live 18 to 24 months. Well, it has been only 16 months since diagnosis but the treatment has gone so well they are talking about resection and a long life. When the doctor came out and put his arm around me and said "Oh, John John John, this is not survivable, make your peace" it was definitely a shock. And now it is more of a shock that treatment has gone so well, it's been a wild ride, but I just have to thank Jesus for all he has done for me..

Just hang in there... Doctors give you the generic answer. So there is no telling how long you have, and that could be a very long, and it will be, time!

Keep your head up, Aloha from S. Korea!!!!

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