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just_joan11
Posts: 4
Joined: Dec 2011

First of all I'm greatful for a place to say what is on my mind that is safe. It is sort of strange that it is here that I think people can relate to how I'm feeling sort of.

I'm feeling ashamed of the thoughts I've been having lately. My shame which is saddness stems from hopelessness if that makes sense.

My mom, 81, has been diagnosed with lung CA. We had our inital consult with a thoracic oncolgy surgeon on Monday. I can't let go of some of my thoughts since that appointment. It was the typical you've got Cancer and in cases like yours there are 4 options type of canned practiced spiel. Option 1: surgery, chemo, radio. Option 2: chemo, rad. Option 3: rad only Option 4: palliative care (adding in there that he feels my mom is no were near that stage of the game of course).

My moms spirit is that I'm going to fight this thing. I'm going to support her anyway that I can, of course, and we are early in this journey. I can't help myself but I am who I am. I'm a practical, no nonsense type of person. I'm sort of a plan for the worst and hope for the best type of individual. I wish I was that eternal type of individual that is the eternal optimist and views the world through rose colored glasses but I'm not.

So during the appointment my mom indicates her preference for approaching this situation aggressively with surgery,chemo and rad therapies. The doctor dangles the carrot of performing surgery out there initally, then follows up with the typical BUT we've got to do chemo and rad first before we do surgery and if we do surgery we've got to do more tests type of deal. In addition to that this doctor also casually mentions that 10 years ago that a person my mothers age would not be offered such options but that today they don't let age influence care decisions.

I have both a medical and dental background. Surgery of any sort is difficult. Optimal health is reaaaaaaalllllllly important to ward off complications. Surgery in my moms case for lack of a better term is; brutal... removal of a portion of the lungs, the lining of the lungs, and portions of the ribs, and maybe even some other types of things. Not to mention the feeding tube, the chest tubes, the cathter and any other sorts of assorted items that will accompany my mothers care irregaurdless of weather she has surgery or not.

I know my mom is at the best health that she's going to be in right now.... not 2 months from now.

Of course the doctors expel the typical conversation out there of "we've got to shrink the tumors first so we can get them all out." type of talk.

During the whole conversation I'm sitting there saying to myself, "if you think surgery is an option and it will improve my moms chances then do it NOW for pete's sake."

Yet of course that is not the direction that they are willing to pursue. Nope. It's going to be run my mother all around hill and dale... have her do 10 million tests... hit her hard with chemo and rad...diminish her health... just to then re-evaluate her after the chemo and rad and end up with the outcome of saying, "I'm so sorry but your health has changed to much and now your not a good candidate for surgery." Not to mention the little added tib bit the doctor adds in saying..."that the chemo and rad can make my moms current state deteriorate faster." or in essence that the rad and chemo therapies might help matters or make them worse.

Its like this game the doctors are playing with my mom of..."We know you're going to die. But we can't out and out say your going to die. So try these things and if your lucky maybe it'll help." To me this whole thing is false hope.

Yet on the other hand there is my mom. She's never had anything seriously wrong or spent a day of her life in the hospital. She's freightened and doesn't know what to expect. To her it's like going and getting your haircut or your teeth cleaned or something. You do it and get it over with and move on type thing. I can respect that chemo and rad would be a less invassive avenue for her. I can appreciate that those therapies might help her with processing the changes occuring in her life. Chemo and rad are dramatic but not as dramatic as what is going to result if and when they do that surgery.

I wish I could say to my mom,"Each day is precious. There really isn't much chance of living much longer. Stop wasting your time with this medical nonsense because its not going to make much of a difference. I want to say, "Spend what time is left living life well and enjoying whatever it is you want to do with the time that you have left." But I can't because she wants to fight this thing.

jimwins's picture
jimwins
Posts: 2108
Joined: Aug 2011

Hi Joan,

You stated you are more of a realist vs an optimist and I understand your
perspective though I probably lean more to the optimist side :).
Don't be ashamed of your feelings - they are true feelings.

Your mom wants to fight and that's her choice and I think your only
choice here is to support her in that even if you don't necessarily agree.
I've seen some miraculous things at this site and at the hospital where
I was treated so there is hope. I know it's hard but you stated in another
post a friend suggested you take off the "nurses hat" and put on the "daughter
hat". Maybe that will help you.

These are hard decisions and tough times. I wish the best for you
and you mom. I'm glad you feel comfortable enough to share your
feelings here. I'm sure others will chime in shortly.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
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Chippidy
Posts: 8
Joined: Dec 2011

My Fiance was diagnosed with Stage 4 stomach cancer that has spread to his lungs in mid November. He was given two options. Go through Chemo and add a year to your life. Do nothing and you will live 3 to 6 months. Surgery and radiation are not an option. He of course is in denial and will not disclose to his family any of this, but that's another issue.

He had chemo last Thursday -- and it took a dreadful toll on him. He couldn't drink/sip/or eat anything. Even after his stomach was empty, he kept throwing up fluids/bile. I am watching him waste away. He can't eat anything. He has now been given a J-Feeding Tube. We are hopeful that he can keep some nutrition.

Back to why I felt the way you feel. The balance between quality and quantity of life is incredibly close -- at least in his situation. It is heart wrenching to watch him suffer this way. And all for maybe 6 more months of pure SUFFERING. Of course, I will go with whatever he wants and support him unconditionally. But I feel so helpless. I would rather watch him live a limited life than die a miserable one.

Don't be ashamed. I think it's very natural to have these kind of thoughts. Hugs to you.

Cpnqueen
Posts: 29
Joined: Nov 2011

I am sooo glad we all seem to be having the same thoughts! Was mad at myself for even thinking them!

ddpekks's picture
ddpekks
Posts: 162
Joined: Sep 2011

I'm like a freaking yo-yo! One minute I'm feeling the same exact thing you just described and the next I'm thinking, "good for you, buster, let's fight this thing". And I feel guilty about the way I feel with both scenerios.

My husband is 71 and he's not ready to give up. He has already fought one year with chemo/rad/surgery/and more chemo for colorectal cancer. Then they found new lung/liver & prostate cancer. It's non operable but with major chemo regemine they can keep him alive for another year or so - at what costs? On one hand I want to scream at him to stop, on the other hand I think he is too young to give up.

I guess the only thing that keeps me going is knowing I'm not alone and knowing that there are little (and sometimes huge) miricles out there.

Feel your shame....share it with us....and hug her every minute you can. That's all I know.

Hugs

Deb

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Joan,
I’m probably one of the ones with the rose colored glasses on, but I like to think that I still have some sense of reality lol. I feel for you because the decisions ahead of you and your mom are life & death ones, extremely difficult if not impossible to know which way to go. But this statement really hit me and I felt I had to respond.

~ “Its like this game the doctors are playing with my mom of..."We know you're going to die. But we can't out and out say your going to die. So try these things and if your lucky maybe it'll help." To me this whole thing is false hope.” ~

Those that are fighting the battle are told these same things by docs. So in a way it’s all false hope because no one knows who will be the “lucky” ones and who won’t. If the false hope is enough reason to keep on going and fighting and WIN then isn’t it ok - to a point?

I recently met a beautiful woman who was 78. She BEAT Anal Cancer after having had 2 weeks in the hospital of harsh chemo and 84 doses of radiation over the last year! Yes, she suffered, but she feels lucky now. What if your mom is one of the lucky ones?! (Lucky is a hard term to use, but I guess it’s what it means to someone). You never will know if you don’t try. Maybe she won’t be, and IF that time comes hopefully you can look back and say “we at least tried”. That’s all any of us can do.

Maybe my rosy view is shining here, but won’t most docs say “you have X amount of time and we’re sorry, it’s too late there’s nothing we can do” if there is a grim prospect? I hate to think that they regard this as a game to be played at the expense of people’s suffering. You say she has had great health in the past and didn’t mention that the cancer had spread anywhere, that doesn’t sound grim, it sounds promising (yeah those glasses are dark!).

But in the end, the decisions are your mother’s and I wish you both the best whatever they may be. (If you ever want to borrow my glasses just let me know!)
Hugs & Prayers
Cat

here4lfe
Posts: 296
Joined: Jan 2010

My wife's doctor was up front with telling her that the treatments were palliative, and was to us reserved and stand-offish (if that's a word). 2 years later, he chats with us, doesn't talk so much about buying time, even talks to us about vacations. I just say hang in there, be involved, and support the patient.

Best

Noellesmom
Posts: 1342
Joined: Aug 2010

There's a reason some of us are realists. Somebody has to do the job.

However, I also agree with here4life and try to support the patient's decision, no matter what I think the right one would actually be. After all, I'm not God and I don't know how many days any person has left.

You have your gut feelings for a reason, usually borne of experience, and you should honor them.

However, you might surprise yourself one day if you find yourself in your mom's shoes and saying "I'd rather die trying to live rather than live waiting to die".

Hugs. It isn't easy. Hang in there.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

My mom also is 81, and I've been taking care of her up and down the cancer treatment roller coaster for three years. She finally stopped treatment in August and felt so much better. She is dying now, but at least she had a few good months at the end, without heinous treatments.

Please understand that the doctor HAS to offer these treatments according to "standards of practice." He can't back down unless there is a "medical event." Until then, your mother is the only who can call a halt to the whole thing. If she makes it a year, the medical machine will make somewhere around half a million.

Be honest with your mom so she will have someone to go to. I told mine I'd support her in her decisions, and I did, but personally, for me, I would never, ever go there at that age.

Has your mother's cancer been staged yet? There is a big diff between Stage 3 and 4. Mom had the big guns chemo used for lung cancer (she has ovarian) and it is very tough. Hang on tight, it might be a bumpy ride.

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

I am very sorry for the road you are traveling. I really do think the more information we know and understand sometimes the harder the decisions are. I also believe the medical field is enormous and the cancer industry is huge. As lay persons we wouldn't be able to grasp everything involved. Each one of us needs to sign an advanced directive. Our families need to understand our own feelings should disease take us over.

My mother at 79 with DNR paper in hand and lung cancer decided against all treatment. End of argument.

My husband with melanoma and DNR paper slipped into a brain hemmorage... he and I talked about the what ifs... But not the rest of the family, lots of opinions including the surgeon's... "say, let's do a brain shunt and relieve some of the pressure,OK". Will that make him talk again? Will that make him walk again? Will he be able to feed himself? And oh by the way... let's not forget that he is dying of melanoma. My husband, 58 years old... and I had to look everyone in the eyes and tell them this is not how he wanted to live the rest of his life. So I said... No surgery to prolong life.

After my decision was made several hours later his doctors met and had the nerve to come to me and let me know I had made the right decision. Grateful? I was mad as a hornet.

I guess my point to all of this is your mom needs to be aware and informed of all decisions and consequences to her healthcare. You are her support. We each should be able decide our own treatment should cancer lie next to us. But I tell you what... I have that DNR paper all filled out when my time comes.

Peace to you,
Deb

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