Okay, I have read most everything I can and cannot find anyone who might have some advice for me. This is my 3rd battle with stupid war called cancer. First one I was 20, had a partial glossectomy of my tongue, second I was 39, sept, 2007 another partial glossectomy of my tongue. I was very lucky, and came out of both surgerys with speech, though much changed, and while I use my fingers to push food around and help it go down. Now in June of this year this damn thing came back in my thyroid and has invaded my trachea slightly. I have lost the use of my left vocal cord, 3 rings of my trachea, and the left thryoid entirely, of course what every lymph nodes were not removed previously have been removed now.
I was so happy that I did not have to have a breathing stoma placed that I gave not thought to swallowing, vocal cord and so on. I really thought that this was going to be a success. Now I am here 3 weeks out of surgery, can hardly talk, the right vocal cord is not functioning properly and I can not swallow, the larynx will not budge. Now I had radiation the first time so I am dealing with tissue that has been radiated 20 years ago. I am depressed, worried about radiation again. I start that in approximately 3 weeks. This is my last ditch effort and it sucks. I should be happy that I have come this far, most of us don't get the 20 years that I have had, but that is not helping. Does anyone have any advice for me? I am trying to stay positive. My doctors have good things to say, but they are not the ones with feeding tubes, the inability to drink a glass of water, that I want so badly. Okay I will stop here and hope to hear from ya'll.

Leann

Leann

My own experience pales in relation to the challenges that you have faced.For me I only ever seen it as a battle that only I would win.I felt I owed the good cells in my body to keep positive and help them in the fight.There is no greater feeling than to see off this scourge.

As for someone who may be in a position to advise then check out Ananths posts

Link: Ananth's story

Hi,
I decided to pen a few word down as Dr. Joshi gave you a link to my story.I am also a good friend of Cancer and his friends who decided to act up when required. I guess your situation is a bit more( or much more ) then what I have been through - but I am still around much to the amazement of all doctors. I am not giving any advice as to if you should be happy,sad,positive or negative but just a few words of looking things in a different perpective.
When I was going through that hell - there was not moment that I was positive or happy and I never ever fought any battle. Nobody wins battles against this guy - its just that some are spared, some are disabled and some leave us. The fact that I am alive today is something , as I mentioned, of a mystery and I just do not seem to get answers.
Time is a factor that is not just a healer but something that has gone by will never return. If you find you are still here - make the most of it and think of today as the last day of your life. Everyday is a new day and you are born everyday - in a matter of speaking. I may sit and brood about a lot of things ( what I could have done, what I could have become ) but I dont think I under any circumstances turn the clock around. The best option I found was to accept things as they are as if you do not - you can never be happy. Again its not that I am overjoyed by being alive but I have learnt to live and appreciate things in life that I used to take for granted. I also at times think of all the great times I had even upto seven years ago - and then suddenly bang, from a guy who loved his food - I landed up becoming a guy who could not eat at all - no solids, no liquids - nothing orally. Its been seven years now yes it is inconvenient but I have accepted the fact that I will have to live with it - I dont have any choice in the matter. I also do not have an air passage and that means I cannot talk except by blocking the stoma button on my throat. This was one thing I refused the doctors to remove ( the voice box)even if it ment adios. My luck lasted out and luckily I still have one chord moving around a bit. I had to have a voice and as I had all the time in the world I began working on my voice and came up with what I call "an orator". An extremly easy invention that gives me speech and its normal speech ( I can sing too).
I can no longer work as I can no longer travel - so I kept trying new things to carve out a new carrer and future - selling insurance, giving Spanish classes etc. It was difficult at start as I felt it was below my dignity to sell insurance but then with time my attitude changed. I do not feel bad about anything I must do or am asked to do. I have now stated trading in shares - for which I found I have a natural flair and hopefully am on my way to become a m(b)illionare.I have learnt not to be scared of anything or anyone, I have learnt to understand how you feel and are feeling, I have seen life from both sides of the fence and you know something I still have not figured out which side is greener!
The above may be a bit of a change from my early stance but its time thats taken its toll as -the clock does not wait for anyone. You have a fantastic sense of humor and I feel I should not even say I feel sorry for you as that would be insulting you. Just mantain that sense of humor and try hard as you can to work out (you will have to decide on how - I decided to run and work out at the gym!).
So my dear friend - you are one heck of guy and I wish you all the luck and very best in life and that trust me is from the bottom of my heart. It would be my pleasure to have you as a friend for a long, long time to come.
Take care and with warm regards,
Ananth

Dear Leann,
Your story made me feel so very sad for you and I know you must be feeling pretty awful!!! But, hang in there, there are people around that care for you and I'm sure will help you through this next battle. You also have the right to feel angry at times, but when that mood is over, move forward and stay strong again ready for anything, we all know you can do this you have been very strong already.
God Bless, stay strong, Tracey

Hello all,
Doing better todve day, I know you all know what I mean we have our good days and bad days. Today is a pretty good day. I was so depressed the other day and had forgotten all I have been given thus far in my life. Being angry doesn't help at all, as a matter of fact some times I think it hurts, because then we don't do all of our exercises. I am going to live with this, because as you said Ananth I really don't have a choice and life goes on. I look at my boys, one in college, one in middle school and the last in elementary school. They need me and I am here for a reason. Besides I always wanted to learn sign language, now I have a reason. Thanks to all of you for helping me through that day. I know I have a lot more of those days ahead as I begin radiation soon and all the therapy to deal with.

Bless you all
Leann

Hi Leann,
Ananth on this side again - not to give you any of the heavy advise but some of small ones.As you said you knoew why you are still here - its because of your three boys. I am sure they are proud of you or withstanding the pain of what you went through. They are the only reason to live and this is the way I feel. If both my sons - the elder who is in University and the younger in high school were not around, I would have found no reason to be alive.Like you - I also hate going though this trauma but do we have any choice? NADA!! Life is a strange thing - something none of us will understand so its best to leave trying to analyse it and just carry on. I put up a great act ( when I am not here! ) and pretend that Cancer is something just to be brushed off. However, when I am in my bed at home - I start thinking and thats when I feel horrible for various things I may done to various people- some good, some bad - and visuliise that I would have done things differently. That however is not that I think of it as repentence or a part of my 'karma'. One thing I am glad about is - I no longer have do good or bad to anyone. I dont have to worry who is going to be the next president of this country or if Bush is going to relected.
When I was diagnosed in April 2000 with cancer of the lyranx in its last stage - I had actually decided not to go to any doctor or go in for any treatment. But as luck would have it - I had to and today I feel to some extent I did the right thing but more often then not I did not.
Sorry I have just been rambling. Hope you understand. As I said you have one great sense of humor and thats one thing which will really stand you in good stead. Take care of your selves and say hi to your sons from India.
Ananth

Hi Leann,
It's definately a roller coaster ride!
There were times when i just wanted to go to sleep and not wake up. & it's so difficult to see that you'll even have any kind of life back. But thats not the case. See through each bad day for what it is and remember you wont always feel so hopeless!
All the best,
Michelle

Well guys I never thought I be so happy to get down some chicken broth. How much went in my stomach and how much went in my lungs I am not sure. But I know some of it went the right way. I do have something humorous to share with all of you. My husband has decided no one snores like me now, so one of us has to move out of the bed. Apparently I sound like a foghorn. I know it is the tube that is still in my nose, but I think it is funny. I have even woke myself up, but I am not telling him that. I only moved into another room because I don't sleep for long periods of time anyway.

Ananth I just wanted to share something with you because I know you will understand. In my darkest moments when I say to myself this is it I am not fighting any more, I give up; something goes off in my head that says your crazy. You don't get that choice, you can't give up till I decide to let you. I know that sounds insane, but that voice is so much stronger than me. Even when I hurt so bad and I want to join my family in an activity like swimming that I can't do right now, if ever. I have begun to realize that how truly powerless I am to decide anything about this ride except what is in the best interest of my children. Okay I know all this sounds so corny. But those of you who have sat in bed alone wondering where do you go from here will understand. We only go where that voice tells us to go and then we hope that that direction is easier than the one we are on now.

Take care everyone,

Leann

Leann,
I had Nasopharyngeal Ca & when you have a 4" tumour coming down your nostril trust me - that makes you snore!
There were times when, like you say, i'd wake myself up snoring too! Normally just as i'm drifting off... and i'd do an ENORMOUS snort!
Great news about the chicken broth! It's a start! Small steps and you'll get there!
All the best,
Michelle

Dear Leann,
I know exactly what the feeling is- when one is going through that hell survival and fighting does not even feature in ones routine. One does not care is one lives or kicks the bucket. Its only later does one realise that you are still around not because you fought it but because you still had somethings to finish and you know as well I do what they are.
The biggest problem Leann, is that we all try to live a little bit in our past and even that little bit makes us feel miserable. Its really easy to say wipe out the past but that is impossible. There will be so many thoughts that flash through your mind of happy times and bad times and you want to feel that you could just wake up and carry on with your life - except that you are not asleep but very much awake. Thats when it hits and hurts for some time.
I was diagnosed when I was 42 in April 2000. The irony of the entire situation - I had just returned from Mexico and Argentina after a business trip after a long stay in both the places.My scheduled return was the first week of April and I was looking forward to getting back as I had just been promoted to VP - Mercedes Benz India - the first Indian to take this post. My luck - I got my promotion letter but did not spend on day on my designated chair. Its these kind of things that begin to hurt and one keeps wondering what would have life been as the VP - but then I look down I see a peg tube in my stomach and a stoma button and dreams come shattering down. We all have to just learn that we cannot go back in time and change things and so we have to accept whatever life throws at us without any thing we can do to stop it.
I look at things as the above that time cannot be turned around and so have to carry one. Yes, my day will come when I will not have to think about any such thing and everything will be really peaceful. Till then I have to play the one sided game and make best of it ( the kids)!!!
Hope I managed to put down things in a way we all understand as I just let my feelings flow without any particular path.

Lots of love,
Ananth

Hi Ananth,
I have been so busy this week. I am so sick of seeing doctors. But in about 10 days we start Chemotherapy and radiation, this is in addition to all the other therapies. Now I am really looking forward to chemo; the vomiting, loss of hair, fatigue (can it get worse), anemia and so on. Of course then we have radiation burns, thickening of the skin and more fatigue. Boy I am so excited! My son is having a hard time understanding why they have to make me more sick to make me better. I can't blame him I have a hard time with that too.
I tell you some of these doctors are so nice too. The one today said their is onlya 15% survival rate, Oh but that does apply to you! We think this will be very successful for you. Wow way to get my hopes up, huh. I told her you know I am glad were not discussing anything serious like my life or I might get really depressed after hearing that. I know they mean well, but sometimes the way the tell us things is really bad.
Did you get tired of people asking you how you are doing? Sometimes I want to turn around and say Look I have diarrahea half the time, dehydrated the other half, exhausted, so on and so on and then end with you know I do have cancer. How do you think I am doing? I know people care but it would be so much better if they said things like "let me tell you what is going on in the world" and just let the subject of how I am doing go for awhile. Better yet the people who say what can we do for you? I always want to say "we can trade bodies, yours looks better than mine." Or how about those family members that say Oh I wish this was me and not you. Do you ever want to say to them: " yeah, I wish it was you too!"
I know all that sounds mean and people just want to help, it would be easier if they would tell me what they can do and I can either say yes I need that or no I don't need that right now. My church has been wonderful, but things we need help with are not things people thing about. Like cutting the grass, and cleaning our pool, or even helping us finish painting our house. Something we were in the middle of when all this started. Most people just want to clean your house or take you to the doctor. I may need that later, but now what I need is the other stuff.

Okay enough complaining for tonight. I hope all is going well in your life. I am so grateful for your input.

Leann

HI Leann,

We can't feel what you feel, but we do share your pain and frustration. Sometimes it is better to say nothing, just let you all know that we care and leave it at that.

We all must bear our respective crosses as best we can but there are days when that burden is just intolerable. You do not have to apologise for that to anyone!

It is just not you the patient who is faced with the reality of mortality when cancer strikes it affects all who know and love you!

One has to question whether another year, another month, another day or another second is worth the additional suffering of securing it when death is in any event inevitable for all of us and as Ananath and I believe death is not the end but merely a doorway to something better.

Yes we, the bystanders, who do not share what you must suffer, do express our selfishness by insisting that you remain with us for as long as modern medicine can allow that to happen.

Personally I would only wish the pain managed were I to face the most extreme case where to live must mean disfigurement and no matter what others may say, personal humiliation at the sight of our mishapen and broken bodies. But I am 59 and have lived my life.

Yet the will to survive is beyond doubt the strongest factor in our genetic make up, regardless. To contemplate accelerating the end by reason of the suffering of an alien lifstyle is the most difficult scenario equally as difficult as contemplating murdering any other living being.

There comes a point however in every terminal illness where the treatment must end and I am of the opinion that the only competent judge of when that point has been reached is the Patient. Choosing to end treatment must be the absolute right of the patient which the legal system, all relatives, doctors and carers should respect and adhere to.

Thereafter palliative care should ensure that pain cannot break through and that suffering is never extended beyond what is tolerable to the individual patient.

However in particular as a side comment to Ananth my dear friend you are a million miles from that stage of despair. Sure you cannot eat, you cannot drink: but you can live, inspire, enjoy jokes, cricket, love and be loved.

Of course you and Leann will face days you would rather not see but provided there is hope for tomorrow then no matter what we should strive for every tomorrow that we are gifted.

I am proud of the courage that I read of in this site such infinite courage that so far I have not had tested personally and might yet be so ashamed to find lacking in my soul!!!!

I pray for you Leann that your soul is strengthened and supported internally by the Holy Spirit, that your family and friends can comprehend your frustration and forgive your anger which is justified and reasonable anger.

May you know the Love of Christ, the Grace of God and the Fellowship of the Holy Spirit in your fight for survival but only where survival has added value and meaning for you and those you love.
Alan

Hi Leann,
I really love your sense of humor and to a large extent (at least in my case) does make the suffering easier as it only hurts when you arev laughing!!What I really feel for are the kids who see their parents going through this hell as it is a trauma that will always remain.
Even though you are joking about it - I know how tough it must be to wait and wait for what is to follow and what the side effects will do. I have been through the entire exercise and thats one bit of humor, I did not find funny.

I was in the same boat as for survival chances and usually it never exceeded 5% and would drive my doctors nuts as each time I refused to die! I know one thing for certain even though they mean well, unless they have experienced the pain- they will never ever know what one goes through. They cannot even fathom the depth as the pain they have seen is a cut finger or a stitch here and there!
I played a smart game by informing everyone that the doctors had advised complete isolation in order to avoid infections and that did help. What I too find irritating is repeating the same story over and over again and yes the same as it is all over the world about how could it happen to such a wonderful person etc and how they wish they could take it on themselves - well, like you even I wish I could pass it on to one of them!!!Leann- it does not sound mean as people also should understand that at times they are the cause of increasing you stress levels and depression. At times you have no choice but to make your feelings brought out into the public and tell them all what you actually feel.
You know Leann, leaving aside the cancer - you are lucky that you have so many people who want to do things for you like cleaning your place up, take you to the doctor or maybe bring you a some ice cream sundae. I have a lot of faith in Alan and have been truly inspired by his words. Here in India - we have nothing of that sort - you have the problem and its noone elses and thats it. Even my neighbour did not know I had cancer till about a month ago!!!

As I keep saying the only thing I am thankful for is that I refused my treatment outside India as every doctor to who my case was reffered wanted to go chop chop with my larynx. That was standard procedure in stage 4 and I refused to accept it and well I still have a voice persay. The only true saving grace is that our doctors are truly fantastic and the two who treat/ed me were open to inputs from my side as well. I am sure if i had been treated abroad - I would not be alive today. But then I am one of the few who could afford the treatment which very very people can and even those with money are left so financially drained that its a misery to see them living such a lousy life after having had everything.

More often then not I wish I had never mentioned the loss of my voice for those ten minutes of the 20th. of April 2000 to my wife - a day which changed and shattered my life. I would have prefered to have lived with the cancer and kick the bucket when the time came around as at least it would not have ment seven years and counting of hell. I have made a resolve that I will never ever enter another hospital for anything to do with cancer - however serious things may be and have made each one of my family agree to my wishes.

I truly loved life and lived each day to its fullest and today I only live a full life when I am alseep as thats when I am totally normal in my dreams. My life which I worked to build up got shattered in a couple of minutes.Imagine receiving my promotion letter to VP India of the famous Mercedes Benz and the same day being diagnosed with cancer! Anyway - its bound to end one of these days and that day is what I am looking forward to. I have no other regrets in my life as I have lived a life in 41 years what most people would not live in ten lifetimes so I dont have to keep fretting about all that I could have done - as I have done it all.

I think thats a lot of complaining from my end and Leann do keep in regular touch as its really great to hear from you and as i tell all my freinds whatever the situation I think I have shoulders broad enough to carry you through your times of need. this is one site where I always post the truth as I know each one here is going through their own personel hell.
You just keep your chin up, flirt with the doctors and just think of me when you do that!!

Tons and tons of love,
Ananth

Dear Alann,
I still have to send you that long mail but hesitate at times. I honestly respect your advise and find it brings a lot of peace and solace in my life. I will be mailing you seperately later today and be prepared as its going to be a long long mail!

Love,
Ananth



TE]Originally posted by dancingwithroses:
HI Leann,

We can't feel what you feel, but we do share your pain and frustration. Sometimes it is better to say nothing, just let you all know that we care and leave it at that.

We all must bear our respective crosses as best we can but there are days when that burden is just intolerable. You do not have to apologise for that to anyone!

It is just not you the patient who is faced with the reality of mortality when cancer strikes it affects all who know and love you!

One has to question whether another year, another month, another day or another second is worth the additional suffering of securing it when death is in any event inevitable for all of us and as Ananath and I believe death is not the end but merely a doorway to something better.

Yes we, the bystanders, who do not share what you must suffer, do express our selfishness by insisting that you remain with us for as long as modern medicine can allow that to happen.

Personally I would only wish the pain managed were I to face the most extreme case where to live must mean disfigurement and no matter what others may say, personal humiliation at the sight of our mishapen and broken bodies. But I am 59 and have lived my life.

Yet the will to survive is beyond doubt the strongest factor in our genetic make up, regardless. To contemplate accelerating the end by reason of the suffering of an alien lifstyle is the most difficult scenario equally as difficult as contemplating murdering any other living being.

There comes a point however in every terminal illness where the treatment must end and I am of the opinion that the only competent judge of when that point has been reached is the Patient. Choosing to end treatment must be the absolute right of the patient which the legal system, all relatives, doctors and carers should respect and adhere to.

Thereafter palliative care should ensure that pain cannot break through and that suffering is never extended beyond what is tolerable to the individual patient.

However in particular as a side comment to Ananth my dear friend you are a million miles from that stage of despair. Sure you cannot eat, you cannot drink: but you can live, inspire, enjoy jokes, cricket, love and be loved.

Of course you and Leann will face days you would rather not see but provided there is hope for tomorrow then no matter what we should strive for every tomorrow that we are gifted.

I am proud of the courage that I read of in this site such infinite courage that so far I have not had tested personally and might yet be so ashamed to find lacking in my soul!!!!

I pray for you Leann that your soul is strengthened and supported internally by the Holy Spirit, that your family and friends can comprehend your frustration and forgive your anger which is justified and reasonable anger.

May you know the Love of Christ, the Grace of God and the Fellowship of the Holy Spirit in your fight for survival but only where survival has added value and meaning for you and those you love.
Alan[/QUOTE]