How do you handle being told you are terminally ill?

[-Cheryl-]

Hello Group,

May I begin by saying that I am a Licenced Professional Counselor. Does that make me special? I am afraid not. It does not make me immune to cancer, or the emotional trauma that accompanies it. I have't really mentioned my profession much, because people have certain expectations for us. I like all of you, have meandered back and forth between emotions. I run the full gamet. I guess the only thing that seperates us is the fact that I went to school to help others deal with life's stresses. I try hard to see the positive in situatios. I have learned quite a bit since being diagnosed. My diagnosis, by know means makes me the resident expert of other people's feeings, but it does give me more awareness of my own. I must tell you that I have my days of doubt too. Yet, this board reminds me of the positives in my life, and I have learned a lot about my self.

I am seeing more and more non-smokers being diagnosed. They are also at a lot younger age. Few recover from lung cancer, and often die within the first two years. We need to all become more active. I know the excuse....I used them too. Excuses like: I am fighting for my life, why worry about Joe Blow....or, "I am going to die anyway, I am too tired to fight." It is not going to change until we change perceptions. Jack, my husband has left the board. He went to "Cure" magazine to convince them to print our information in their Toolbox. After some jaw flapping, it will be out next edition. He feels that people do not get him. He may be a bit radical for some, but he is passionate about his beliefs. We need his activisim. He gets things done and for our cause. It may not be everyone's way, but few are doing anything to support Lung Cancer. We need more people like him- unafraid. Thank you Jack. I see what you are doing. Please keep fighting for us. I wll become more involved. You have made a difference. Thank you Cure for the plug. We are 1400 strong! WE must demand money for research and a Cure. We are talking about your Life, or somebody you love. We need a Cure!!! Don't wait for somebody else to Care!!!

So how do you handle being terminally ill? You do what you have always done, and let this disease eat at you slowly while you are a breathing ,heart beating, brain functioning humane being; or, you join forces with other suffering from this malody and fight this beast.

Cheryl

[Andrea]

Cheryl,

I hope Jack decides to rejoin us. Is there anything we can do to help with that? We NEEED activists desperately!!!

I cannot answer the question of waht you do when you are told you are terminally ill. I asked my friend who is a doctor that question, he said we are all terminal. I was like whatever, not teh same thing.

I don't consider lung cancer terminal until it is the end. Until then, it is just a big scary u nknown.

[ellakc2]

Hi Cheryl,

I have known people w/various types of cancer in my life. An I believe

lung cancer is the most discriminating type of cancer. Because people don't know and they believe you do it to yourself through smoking. I know is crazy but people have actually said that to me when I was diagnosis because I WAS a smoker. I'm proud of myself for not smoking

anymore (believe it or not). Because of anytime in my life when I felt like

I needed a cig, it's now with all the stress of cancer. I've had no signs of

my cancer for almost a year. And I pray I won't ever again. I know never say never. But god willing I will never pick up another cig again. I wouldn't have to worry about cancer killing me, my kids would. Have a

good holiday.

[elnodel]

Cheryl, please see if you can't persuade Jack to come back. There's room here for everyone -- for different styles and different emotions and different everything. I know that Len and I don't have that much in common with many people on the board EXCEPT the one major thing, lung cancer. And that's a bond that can't be severed. We desperately need all the activists we can muster. I've tried my little bit, not nearly enough, sending letters out to senators, congressmen, etc., etc. No reply, of course. But I'm also trying to let everyone I know understand the predicament that we are all in -- I include myself, as caretaker -- with such limited funds for and understanding of lung cancer along with the onus that sometimes comes with it. We need Jack's voice, along with that of everyone else.

I don't know that anyone, even professional counsellors like you, have a good answer to your question. And while the glib answer -- we're all terminal -- is just that, glib, it does point to the one central truth that people like Dean have been affirming for a long time -- that you can learn to live with this d___'d disease and appreciate, minute by minute, the life that unfolds around you. I know that you've been doing that all along and that you are a powerful example to the rest of us. You have my unabashed admiration!

Ellen

[-Cheryl-]

Ellen,

I appreciate the support. Jack does too, and said that he was glad that somebody "understands" him. He recieved some ugly hate mail. Jack was unafraid to say what he felt, speak his mind. Some consider him an activist, He's just fighting to get those with Lung Cancer what other cancers already have. We are severly underfunded to be the most widely diagnosed cancer! 170,000 is a force to reckon with!

Cheryl

[Elaine]

Cheryl

This is an ugly disease, frought with more physical and emotional pain than I could ever have imagined. I have posted before that I support everyone on this board and everyone anywhere who is fighting in whatever way they can.

I don't blame Jack at all for being impatient--I am TOO. We all should be because if we don't it's going to be the same for the next generation of people--smokers and non-smokers, young and old. I do wish we all could be more than our fallible human selves and not blame each other--I mean that for all of us.

With you all the way

elaine

[slinaresholz]

Hello Cheryl,

I guess there's nothing we can do but live each day to the fullest.My prayers and good wishes are with you and thank you to Jack for all he has tried to do. God bless you!

Sharon

[lindseysmom]

Cheryl,

WOW!!! Those last few sentances say everything. Yes we do just go one doing what we have always done. I have been thinking of ways to make a difference. Your Dear Jack is right we do need to stand-up for yourselves and our loved ones. I think there that there are many here on this board that are and would be willing to do something, but have no idea where to start. What can we do? In November I've signed up for a walk for ALCASE. I have contacted the American Cancer Society to start a support group in my area , they are suppose to be sending me a book

but have not received it yet. I have written to Oprah and the Montel Williams show to see if they would be willing to do a show about lung cancer with no response. The Montel Williams show did do a story last year on Barbara Tarbox, that had lung cancer. it was so heart touching. Should we write Congress, Senators? This board is wonderful but just maybe we can throw around some ideas to make a real difference.

Thank-You Cheryl and Jack. Look forward to some ideas that we all can work on.

Best Wishes,

Dee

[lisaRN]

Excellent points, Cheryl.

I completely understand what you are saying about keeping your profession quiet.

When we were at Yale, Ahmed kept telling everyone "please talk to my wife, she's a nurse". At first I thought it might help to get things done, you know, maybe someone would show a little "professional courtesy".

Not only did we not receive much professional courtesy but in fact the opposite happened. Many of the docs and nurses blew us off when it came to explaining the diagnosis, patient education, etc... Everyone kept saying " well, your wife is a nurse, she understands" I had to keep shaking my head and begging for information from docs who had one hand on the doorknob.

I realized that we should probably try to keep it quiet for a couple of reasons. First of all, I am a new nurse. I graduated from an RN program in MAY 2003. Secondly, I was not a cancer nurse and new little of the specialty until this Dx. (I am a home care nurse but haven't worked since Dx in April).

When we changed docs and hospitals, I told Ahmed to try to play the nurse thing down a little. At our first consult with Dr. Coscia, he already knew I was an RN from our family doc but I thoroughly explained my experiences and my need for details and to be treated like any patient without a medical background. Thank God, he totally understood.

Afterall, nurses like doctors do not know EVERTHING and in fact look at all the specialties we have. There is a reason medical professionals choose specialties, so they can be great at one and not be labeled as Jack of all trades, master of none.

On another note, I completely agree about the activism thing. I am told that nurses in general are notorius for not being activist.... I for one do not intend to follow that stereotype. When my husband was first Dx'd, I thought to myself, "someday I will speak out against this ugly disease but right now I have to focus on us".

I guess I am finally at a point where I realize that you cant wait for someday... somehow I will find the energy and time to do both, NOW. We don't have time to say someday with lung cancer. This disease doesn't afford it's victims the luxury of TIME!

I have read some of the threads on activism and see some great ideas pertaining to the media, walks, etc...

Now don't laugh but can't we sue congress or the US government or something to get more money into research.... what about organizing marches on Washington or speakers, etc...... class action law suits usually get attention.... so do major protests....

I am thoroughly disgusted when I read things that give me the impression that somehow lung cancer gets ignored because people might think that "it was the patient's fault for smoking".

First of all, even if only smokers got this disease, why the wouldn't you blame everyone who gets heart disease for eating to many cheeseburgers ( I wont go on and on, I am sure you get the point)

Secondly, people in this country need to WAKE UP! THIS IS NOT A SMOKER'S DISEASE!!!!! What on earth is going on with the volume of patients getting lung cancer who had "no obvious exposure or family history".

There is so much we need to look at here. I agree with the other replies also Cheryl. Although I am new here and am not at all familiar with your husbands posts or positions. But I am sure of one thing, WE ALL NEED TO AGREE TO DISSAGREE sometimes and bear in mind that the most important thing here is banding together to FIGHT THIS DISEASE!

We need people like your husband who have the dedication and desire to fight regardless of the method or style of his approach.. Again, I have no idea of his style but in my experiences sometimes the 'odd one out' gets the most attention... in this case, is that a BAD thing????

Okay sorry for the rant, my fingers are tired now, so I'll be back later.....

Keep up your spirits everyone... it's not over 'till it's over, and even then...

Lisa