Life after cancer

edbravo
edbravo Member Posts: 63
edited September 2014 in Head and Neck Cancer #1

This may be the time i am hitting the brick wall although treatment may be over, i just feel i cannot put the cancer to the back of your mind and park it there. It still overwhelms my thoughts and interferes with my day-to-day living.

However, i have managed to reach to a point that i have made peace with god. If he deems that i am worthy to be here, so be it. I just can't live with the burden of worrying everyday if i ever be freed from this dreadful disease.

I just wish god will give me the best and most happiest years of whatever time remaining for me in this world.

Like my doctor said " you have 70 percent chances to be cured and i can only help you that much, however the remaining 30 percent is in the hands of god". What did your doctor said to you?

 

 

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    My Thoughts...

    Welcome to the life post cancer Tx....

    I can probably say that the majority of us have those very same fears for several months, to even a few years...

    It gets better...

    John

  • wmc
    wmc Member Posts: 1,804
    I look at this way.....

    I have to look at it this way so I can live with it.

    First. My doctor never gave me odds of survival. I was told I had to have a laryngectomy and be a neck breather, because I have bad lungs and can not survive the surgery or radiation if I don't have it. So I guess my odds were ZERRO.

    The odds for Laryngeal cancer is [On average] 60.4% to make 5 years. I never had RADs so my odds went up. They got all the tumor and cancer, so they went up again. [Don't know to what, just better] I have a 25% chance I will get a recurrence of cancer, But that means 75% I won't. Never had RADS so odds got better. I have accepted my new life and am really OK with it. I will breath through my neck the rest of my life and I can talk because I have a TEP, Prostheses, in my neck so I push on the filter and I can talk. I will never smell and my leht side of my neck will be numb forever and yes there is pain and need muscle relaxers to be able to turn it like I used to, and pain pills 3 times a day. But I'm Aive and that I love. I still have lung problems that will only get worse to where I will have to be on O2 in about a year. Have to be checked every two months and one year it will go to every four months. There is always something to remind me, I look on my arm and see a medical alert I have to wear and have to have a sticker on my car to say I'm a neck breather. In an emergency they do not know how to get me Oxigen and I have to exlpain to any ER room how to retrive my TEP if it falls out in my trach, I have less then four hrs to get it out and a plug in the hole or it will close, If I get a bad mucus plug in my trach I can stop breathing. Most ER rooms have never seen a laryngectomy  there is only 60,000 in the entire US.

    So to me, the way I deal with it is; I HAD cancer, I don't now. My Glass is more then half full and I'm OK with the New Me, Yes I have changed, alot. It will get easer in time, I'm better every week and coming up to my one year mark of cancer free, NED. And yes it is always in the back of my mind and some days hard to keep in the back.

    I do hope it gets better soon for you as well. Just remember, you are a CANCER SURVIVOR !!!

    Bill

  • Laralyn
    Laralyn Member Posts: 532
    I describe the feeling as

    I describe the feeling as "learning to live with uncertainty." I ended up dealing with it by asking myself a single question when my mind starts to wander to those dark places:

    If the worst happened, would I say to myself, "Boy, I wish I had spent more time worrying about cancer coming back!" or would I say, "I am so glad I spent every minute on things that are important to me."

    I still say that to myself at least once a week. It doesn't drive the thoughts away completely, but it really helps. :-)

  • katenorwood
    katenorwood Member Posts: 1,912
    positives

    To be absolutely honest my doctors have always shot from the hip with me.  But I went in with the attitude I wanted the facts, good or bad.  I have very good repore with most, and we joke alot about our lives and families.  I try not to dwell on a time limit.  I have way to many things I want to accomplish yet.  Getting to know my abi-normal self and the acceptance of many limitations in my life has not been easy. But I think we all finally reach this spot.  I wish you peace of mind with it, and please keep posting.  This is an excellant place to let these idea's feelings out to.  Katie 

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    playing the odds

    edbravo,

    Those thoughts should diminish as you feel better and get more time under your belt.  Count your lucky stars, you are still here with a good chance of finding you are cured.

    I never talked odds with my rad onc, but she seemed pretty sure she could map my way out.

    Matt

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    The odds are in your favor

    It is perfectly normal to be concerned about your chances of surviving this cancer, but given the developments in treatments, the odds are still well in your favor--even though it seems so overwhelming at this point in your journey.  And, you can maximize your odds by doing what the docs say, staying upbeat (humor is OK!), and getting as much support around you as you can. These are not 70/30 betting odds that you have no control of.  Be an active participant in your cancer experience, not a passive one (aka 'victim').

    They don't call this Cancer SURVIVORS' Network for nuthin'!

    As people here will tell you--this is very difficult, but it is also very survivable.  You have a lot more control over the outcome than you think.

    Mike

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Ed

     

    Sound like you are doing great with a 70% chance from your doctor and 30% chance with God. My doctor told me back in 2006 sorry I did all I can do but your cancer is back a 3rd time all I can offer you is more chemo and 6 month to a year to live. I put that in Gods hand 8 years ago and I am still alive today, I live with some of the worse side effects you can think of because of how many times I was treated with radiation, but I am still here. I do a lot of praying and I put everything into Gods hand and then I pray for others.

     

    One time I was in the waiting room for treatment and I was feeling very bad “one of my poor little me days” when I looked up and a guy and his wife walked in and sat down beside me. I could tell he was hurting and in bad pain. They called him in first so I was able to take to his wife, after what she told me about him I looked up and said to God. Load I am sorry for all the times I thought I had it bad and look at this poor man what he is going through. That changed my life that day and no matter how bad I have it now I know that there is someone else worse than I am. Keeping you in pray my friend.

     

    Tim Hondo  

  • jackflash22
    jackflash22 Member Posts: 524 Member
    My doc said

    when I was diagnosed with BoT cancer, I asked if they could cure me. I was told in no un-certain terms, that if they thought they couldn't cure me they might as well not go ahead on expensive surgery and radiotherapy and I had every chance of being cured. Mind and matter has a lot to do it, if you think positive maybe your your half way to recovery. I was treated like an invalid by my loved ones when I came out of hospital and I relished in it as I was always taken for granted to having the widest shoulders to bear everyone's burdens. I was the carer/the cleaner/the cook/the baby sitter/in fact the everything. That lasted until I was showing signs of wanting to do things again, very soon I was back into my number one roll again waiting on THEM. That's when I let my cancer 'buddy' go. I do have days when I wonder if a bump or pimple is a cancer then I put it to the back of my mind. Every year there is an advancement in cancer cures so if cancer does return in maybe a year or two then there will be more methods/treatments for it, one day there will be a vaccine injection like TB and so long as we are having our yearly jab we fear cancer no more. Maybe not in my lifetime but in the lifetime of my grandchildren. thinking negative is letting the enemy in so think positive.

  • phrannie51
    phrannie51 Member Posts: 4,716
    My ENT told me that

    they would get the NPC and that probably something else would kill me when my time is up.....other than that, neither the Oncologist nor my RO ever planted any "odds" in my mind...for that, I'm grateful.  I lean towards being one of those people who try to live up to expectations of others, and in the case of cancer....no expectations with odds hooked to them are fine with me. 

    Putting the cancer in the back of my mind doesn't happen for me, either....but I do manage to park it 6 or 7 files back......it will filter itself up front every week or so, forcing me to make a concious decision that NO, I'm not knawing on that bone today.  Remember during treatment how you had to live in the day you are in?  It's the same now.....do what is in front of me, stay in this day.....tomorrow will be here soon enough.

    Stick around here, Ed....it's good to get this stuff out.....really!  I've had a number of times where I got into a panic, came here and spilled my guts.....it was a relief.

    p

     

     

  • My Consultant have given me

    My Consultant have given me 56% odds of 5 year survival.

    This means, out of every 100 people who have my diagnosis, my stage, site, level of 'differentiation', of those 100 people, 56 will still be alive in 5 years time. (I was T2N2BM0 poorly differentiated).

    They aren't what I'd like to hear, but I suppose they're very much better "odds" than they could be.

    In the beginning, all this played on my mind terribly. However, there came a time (around a couple of months after treatment), I felt I must be very firm with my own mind. I actively forced myself not to think about those figures any more. I also had Macmillan cancer counselling, as I had developed PTSD (many cancer patients do).

    I can very much recommend such counselling. (The point of my post here to you). We all need a bit of help in our lives, and this is a very legitimate time to request help. Modern counselling is very pragmatic, with lots of common sense talk. Do you have Macmillan or something similar in America?

    It's a very funny sort of time after surgery and treatment, getting used to a new body, new feelings, different sorts of problems. It is a period of adjusment as well as a period of, hopefully, recovery. Most of us need a bit of support at this time x x x x

  • donfoo
    donfoo Member Posts: 1,771 Member
    bunch of poo...

    Like my doctor said " you have 70 percent chances to be cured and i can only help you that much, however the remaining 30 percent is in the hands of god". What did your doctor said to you?

    Sorry but that is a load of crap. ALL the talk and thought of statistics need to be pushed into the closet with the skeletons and boogeyman. It is both mathematically and medically incorrect to even imply that YOU are subject to such a classification. Over the entire group such numbers are relevant but they can not in any way be applied to a single person, YOU.

    If we had twenty lives and bouts with cancer then these stats would be more relevant.  Flipping a coin is 50% heads, 50% tails. How many times have you lost betting on heads, lost, be heads again, lost, bet heads again. lost.... Keep flipping a hundred times and you'd probably tally 50/50. Such is the nature of statistics and how improper it is to apply to a single outcome (i.e. YOUR bout with cancer).

    The other key factor that invalidates these stats is the broadest grouping to which the statistic has been applied. Until recently there was just SCC oral cancer - one set of stats for this entire population. How utterly rediculous. Stats now break along HPV status and what a difference. As we all know and have heard each of us is unique and that is precisely why our own recovery is so different.

    Don't attempt to tie published stats to your own case. Do as suggested earlier and spend your time now as fully as you can and not worry and wonder about what tomorrow or next year brings as there is no way of knowing. Enjoy now!

     

    EDIT: saw this related post after posting here Good topic

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    ed, the only time i've

    ed, the only time i've worried about the cancer coming back is if something popped up.  that has happened twice and i worried myself sick.  guess what, it was time wasted.  both times everything was perfectly ok.  i try not to worry about the cancer cuz it won't keep it away any how so i try to live everyday.  it will get better for you also.  give yourself time and in the meantime, tell yourself you refuse to let cancer take anything more from you.  you are a survivor!!

    God bless you,

    dj

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    I had conflicting reports

    by my doctors.  My ENT said that he could get this thing OUT and that with it being so centralized, I'd have my cure.  My rad onc (I didn't like him) told me I could count on a 40% chance of recurrance.  My ENT said that was crap.  I am currently cancer free and am thankful for it all the time. I try so hard to not take one day for granted and I figure that God isn't done with me yet and He has allowed me to stay on this earth for a reason.  It's definitely in the back of my mind ALL the time, but I try not to dwell on it too much.  I go to the doctor a lot faster than I used to to get my worries checked :)  Wishing you a happy, long, healthy life!!

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    donfoo said:

    bunch of poo...

    Like my doctor said " you have 70 percent chances to be cured and i can only help you that much, however the remaining 30 percent is in the hands of god". What did your doctor said to you?

    Sorry but that is a load of crap. ALL the talk and thought of statistics need to be pushed into the closet with the skeletons and boogeyman. It is both mathematically and medically incorrect to even imply that YOU are subject to such a classification. Over the entire group such numbers are relevant but they can not in any way be applied to a single person, YOU.

    If we had twenty lives and bouts with cancer then these stats would be more relevant.  Flipping a coin is 50% heads, 50% tails. How many times have you lost betting on heads, lost, be heads again, lost, bet heads again. lost.... Keep flipping a hundred times and you'd probably tally 50/50. Such is the nature of statistics and how improper it is to apply to a single outcome (i.e. YOUR bout with cancer).

    The other key factor that invalidates these stats is the broadest grouping to which the statistic has been applied. Until recently there was just SCC oral cancer - one set of stats for this entire population. How utterly rediculous. Stats now break along HPV status and what a difference. As we all know and have heard each of us is unique and that is precisely why our own recovery is so different.

    Don't attempt to tie published stats to your own case. Do as suggested earlier and spend your time now as fully as you can and not worry and wonder about what tomorrow or next year brings as there is no way of knowing. Enjoy now!

     

    EDIT: saw this related post after posting here Good topic

    Good on Ya!

    Don has this right.  The statistics are for everyone who has had HNC, but mean nothing to each one of us as individuals.  Do what your docs say, stay upbeat, and get as much support as you can--you can control those things, not the so-called odds of survival.

    mike

     

  • wmc
    wmc Member Posts: 1,804
    A true story that I hope helps.

    This is why I feel so much is up to you on recovery, and this is why I did so well.

    I was 12 [ I'm 63 now]when my Great Aunt broke her upper leg at the age of 80 and ALL the doctors and family said she would never walk again at her age. I was the only one who did beleave in her and she used my jump rope to exersize her leg in the cast so when it came off, she would have use of her leg. I was the only believer and the only one she ever let sign her cast, and I signed it in BIG LETTERS. She stopped driving a car at 86, her choise, and walked every day until the day she passed at 89 years. She showded me it IS up to me so get that attitude you can beat anything.

    Bill

  • Jeff2159
    Jeff2159 Member Posts: 108
    I would die of worrying

    if I worried about how many years i had left. been battling tongue cancer since oct 1996 and never ever worried until the kidney cancer hit me in Jan 2012 and mets to lung in Aprl 2012. i asked Dr. and he said 3-5 years. Well it is over 33 months and kidney cancer is the least of my worries. Then last year I was told my tongue cancer had spread to my jaw and i might have 9 months-- well I did not have bone cancer, there was activity and i lost 3 teeth but all is good now at jaw. Now my worries yes are mets again to lung but this time squamous cell and mets to bone but all areas have recently decreased due to carboplatin 5-fu. Worry yes but dwell on it, not any more. When I have pain and no longer can play golf, then i will worry. I'm very competitive and I hate to lose in all areas, especially golf and cards and now my health. I treat it as a challenge that I will get the best of this cancer even though it has taken me down a few times. Almost like Rocky in his fights. He gets the crap beat out of himself but he still wins 

  • yensid683
    yensid683 Member Posts: 349
    What, me worry?

    Or so I read in a humor magazine when I was in my teens....

    No one can tell you not to worry, and there are times when I wonder "what if it comes back"?

    I choose to not worry about things I cannot control.  I was shocked beyond comprehension when my ENT said "you have a tumor on the base of your tongue" followed up in the next sentence with "I think it's malignant"

    I chose then to live, to live my life on my terms, confident that I would survive.  Yes, I'd be sick, yes, I'd be in pain, yes it would take a while to feel normal again, but I knew that I would be okay.  My wife - not so much.

    I'm two years out of rads and at this point, I'm enjoying my life to the fullest extent.  Sure, there are things that are different but I'm not going to spend my time worrying about "what if..."  It is a waste of my time and a waste of effort.

    Embrace life!  Enjoy living it, ignore the #%#$#$@ doctor and his equally $@#$$ statitics.  My medical Oncologist told me during my first visit that the 5 year survival rate for me (stage IVa) was only 30%.  I continue to be NED with each check up, and I live my life!