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alil support, no judging please

cop_wife92's picture
cop_wife92
Posts: 2
Joined: Jan 2013

Good morning all,

I'll start my story 4 yrs ago when my husband was diagnosed with stage 4 SCC, tonsal and 1 lymphnode. He went through 4 rounds of Cisplatin, and 39 radiations tx's.  No surgery.  He did great, pushed through every tx, still working.  Missed 3 days total.  5 months after his last tx, a chest CT showed a spot on his liver.  Doc said no worries, it's normal.  Next scan, spot is gone...next scan it's back.  That was the first 2 yrs.  Never really explained what the heck that was about!!  Each yr lungs were clear.  Well last year while on vacation, my husband got alil tipsy and told me about his last dr appt which was 4 months prior to vacation.  By this time, he's been going to all follow ups without me, bc we had no worries.  He said during the visit they took several chest xrays, couldn't believe what they were seeing, numerous nodules.  My husband went on to say the doctor said things don't look good, we need to talk about your options.  Options being surgery, which according to my husband would 'severely deform me' then more chemo/rad....or do nothing and live your life the best you can.  So he has chosen the latter of the 2 and do nothing, live the last of his days 'happy & healthy'. 

Now here we are 8 months later, and I'm seeing changes in him.  More phlem, coughing, winter 'cold' lasting over a month, sleepless/restless nights, eatting less, but fatigue is thru the roof!! And recently this wkend pain in his chest.  I've tried talking to him several times about just getting checked out.  Lets see where it is, maybe he would/could change his mind last minute...nope, nothing, zip...nada.  He says he's 'fine', for me to stop worrying.  He's getting older, colds take longer to get over.  He's 42!! not 82!

We have a child who is leaving for the military in 4 days.  I've told our child about the cancer returning, but dad doesn't know I've told her.

can someone please give me advise on how to handle this??  He's in such denial, I see the signs.  I lost my mom to cancer 12 yrs ago.  Went thru all the steps with him the first time, but I'm the one who's 'worrying for no reason'. 

I posted on a direct 'support site' several months ago when I first found out only to be bashed by people who said I was horrible, that I was letting my husband die.  I'm not, he's choosing to not fight.  He's the love of my life. 

thanks for listening. 

Jackie

katenorwood
Posts: 1829
Joined: May 2012

Jackie,

Wow, you're between a rock and a hard place.  Yes, I agree with you, he needs to go in with you beside him and see what options are available.  We tend to get in a mind set of why do anymore ?  Especially when they talk about mets.  But if they don't know it's mets without biopsy, your Husband may be making a sticky situation worse.  If it's another primary (different dx) there are good tx's out there.  This is never an easy decission, but we do have people on board here that are fighting mets to the lung, watching mets to the lungs (me being one) and surgery to remove tumors to the lung.  You two are still so young, and deserve a great shot at a chance.  Also ask about the trials out there, if you can get him to go back in.  This will be his decission, don't please don't think your not doing all you can.  From your words above, I know better than that !  Keeping you both in my thoughts and prayers !  Katie

cop_wife92's picture
cop_wife92
Posts: 2
Joined: Jan 2013

Thanks Katie :) I'm really trying, with no sucess.  This am I tried talking to him, and just got the run around.  He says he's fine, I need to stop worrying.  I said just go in for a checkup, see whats going on and he wont.  Its an endless battle.  I read your post and suggested a second opinion even, which Ive said before...his response, for what? We have a great marriage, going on 21 yrs.  But this time I can't get thru to him.  I've confided in 2 of my best friends, they are beside themselves bc he won't fight it this time.  One of them is a nurse and is so afraid for the next phase, as I am.  I do not want to loose him, but I can't get thru his thick scull. 

Am I the one missing something?  He fought and won once, why not try again?

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

The unspoken truth here is that once scc metastasizes widely, as it had when he had multiple lung nodules, it will not be cured.  Chemotherapy is the only option available, and it may or may not prolong life, but unlike some other cancers, it will not cure the disease.  So your husband made choices when he was told of this that others might also have made.  I understand his not telling you, but ultimately not telling you accomplished nothing helpful to either you or to him.

No one has the right to second guess him for not pursuing this vigorously.  No one has the right to bash you for whatever choices you and he, or he alone made.  It isn't their right, as they haven't walked a mile in either of your shoes.   He clearly has a huge amount of denial.  Whether you can break through that or not is hard to know.  In the long run, his disease will run its course no matter how others perceive it, or whether there is evaluation or treatment now.

To be honest with you, in my circumstances, if my disease returns this time (I've been through this more than once) there won't be anything they can do for me.  I've exhausted all the curative options.  So I will be left with palliative treatment choices.  Do I get chemo early to impede progress of the disease?  That's what some on this board are doing right now.  Do I wait and try chemo later, when I'm symptomatic, as your husband is now?  Or do I evaluate hospice services and simply get my affairs in order.

It is a difficult thing you two are facing.  Your friends should be nothing  but supportive.  If not, they are not your  friends.

 

Welcome to the board.  Sorry for the circumstances that brought you here.

 

Pat

 

 

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

No judging here..., this is an awesome site for support...

Unfortunately, there's not much you can do if your husband chooses no treatment. You can talk with him, communicate your concerns, and hopefully he'll realize that it will hurt you also...

But ultimately, it's going to be his decision..., and time id always of assence when dealing with treatment.

Anyways, if nothing else, you have found a place of support...

Best,

John

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

What a tough spot you are in. If only our spouses could understand that we are not trying to control them, we are only trying to save them. The downside, in a way, is that they are adults and as John said, the decision must be his.

How sad that another "support" group accused you of trying to kill your husband. You'd think a few of them had experienced the same thing.

Just last night my hubby finally took a medicine that his doctor and this group recommended. He has it in his head that he will become a drug addict. I simply asked him at this point if that really mattered right now. I also said that I'm not trying to be the drill sergeant. I'm trying to save his life. Funniest thing is, this morning he said "I wish I hadn't waited so long to take that."

If your hubby is a police officer, no doubt he has a strong and intelligent personality. You might consider having your daughter speak to him. He will eventually realize that she knows what is happening. Especially if he does not seek treatment.

Best of luck,

Luv,

Wolfen 

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our family, although sorry you have to be here.
I'm so sorry for this position that you find yourself in. As mentioned earlier, it is ultimately your husbands decision to treat or not treat but I know you can't help but feel helpless.
I must say that by your name I assume you are married to a cop, as am I. I don't have to tell you how hard headed and stubborn these guys can be! I honestly think my husband would be much the same and I would have to beg and plead to get him to budge. However, when I was sick and going thru treatment he was on top of everything and making sure everything was 100%

I've made it common practice to go to dr appts with my husband because he either can't remember what they say or blows it off as "ah I'm fine don't worry about it". I'm not sure if this will work for you or not and I'm sure you've tried until you are blue in the face but I would approach it from the area of "will you please go to the doctor so at least "I" know what we are dealing with?" I would then say, "I will respect your decision to treat or not treat but at least I won't be in the dark with what is going on as this is not fair to me"
I dnt think he intends to be selfish or hurtful but he needs to realize that you two are on the same team and you need to at least be informed. What if the tables were turned, would he just let you keep it all to yourself? If I know my cop-husband, I'd say no way would he go for me brushing it off.

Lastly, your friends may judge you but they should support you and if they don't, I wonder if they are true friends. You will find nothing but support and useful information here and always filled with love.

Good luck and keep us posted.
Billie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Oops hit the button twice

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Jackie,

Oh how my heart feels for you. Then to reach out only to find a site full of mean people, well you hit the Jack Pot here. You now belong to our family, welcome! I wish you didn't need to belong though!

Unfortunately, not to just say the same thing over and over, it is his decision. You would hope with be married so long he might have talked to you about why he made the decision, but longtimesurvivor said, maybe he knows more than he is telliing you, and he isn't being selfish, just doesn't want to give you false hope. The only thing is, I believe in miracles and until the day Jesus comes to get me, its not my time. I too am in my 40's, 41 to be exact, my cancer was NPC stage 3, I fought and fought hard, if God forbid it came back I would fight again because I am a divorced mom of and 8 yr daughter and I need to survive for her, that's why I like Wolfens advice, if your daughter can handle it, to talk to her "Daddy" and let him know that she is not ready to say goodbye, especially when she needs him for mom while she is serving the country like he did or still does as a cop.

But if he still disagress, I would go with Billie's option, to ask if you could go just so you know what you are facing, so you can prepare to take care of him. No matter what his choice is, you said you have a beautiful marriage, enjoy your time together and lay your worries at the foot of our Lord, utimitally, the path is already laid out by Him and he will help you handle it. Just pray, just trust. We are here whenever you need a shoulder, virtual hug, or an ear.

God bless you, your husband and your brave daughter are in my prayers,

Rachel

Ladylacy
Posts: 481
Joined: Apr 2012

The decision is your husband's.  Sorry if that sounds bad but my husband after fighting laryngeal cancer, then cancer at the cervical of his esophagus that we thought after more radiation and chemo was gone.  Now it has spread to his lung and recurred at the cervical of the esophagus and further down.  My husband had told me that he would not do anymore radiation (which he can't anyway), no surgery and no more chemo.  We were told that surgery was out due to the spread to his lung and that chemo would only prolong, could hasten, his life.  Chemo would not cure the cancer. 

The biggest difference is that my husband is 76 not 42.  Chemo would be much stronger than what he has already had and would weaken him further.  I would love to have my husband longer, but the decision is his.  He is the one that will have to undergo the chemo and the side effects not me.  Our sons want him to fight too but this is his choice and I go along with him even though I don't want to.  I do go to every doctor appointment, mainly because when he had his laryngectomy he lost his voice though he does use an electric larynx but sometimes they can't understand him and he doesn't always understand what the doctors are saying.   Chemo brain.

Please don't listen to what others say about your husband not fighting or you not fighting.  Too many don't know what the side effects are like and they are not the ones undergoing treatment.  The decision is your husband's.  I have listen to friends who lost their spouses to cancer and how they were upset at how their husbands/wives suffered only because they wanted them to fight. 

I don't know how long my husband has, no one does, but I want him to enjoy his time.  Quality vs. quantity and many will agree with that.  Cancer is a beast and it doesn't discriminate, white, black, orange, red, young, middle aged and old,  and I wish with all my heart that a cure could be found.

Sharon

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

Saddened by your difficult position. I often think "what if" and honestly think I might make the same choice as your husband.  It sounds as if he has made his choice and that you have shared your feelings with him.  Treat this time with your husband as "a gift". 

phrannie51's picture
phrannie51
Posts: 3728
Joined: Mar 2012

Partly because I can imagine what you are going thru.....even knowing in my heart of hearts that this is his decision alone to not seek medical intervention.  Since you cannot talk him into going to a Dr., do you think he'd compromise by incorporating some healthy stuff into his life via the food chain?

We just heard from a member today, who went thru treatment at the same time I did.  He too has mets to the lungs, and is not under Medical care (except for scans)....He made a list of things he is taking....supplements, food he is not eating, and food that he is eating...and his tumors have nearly ceased to grow.  Just an idea.....he doesn't have to go see the Dr. to get it approved or anything, just start taking some pills....and eat good food....

Here is the link to Nick's post this morning....might be worth reading.

http://csn.cancer.org/node/256522

I'm so sorry you were treated so badly on the other board....that simply doesn't compute to me, how even on a cancer forum ignorance can run so rampant.

Hugs, Jackie (my name is Jackie, too Smile)

p

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Jackie,

Welcome, and at the same time, sorry it's under these circumstances. I read your post this morning before I had to head out for treatments and appointments. Your post has been on my mind the entire time as I've often thought of this myself. What would I do if faced with the same situation a few years from now?

I just started the journey last week and have 5 more weeks to go. I stand a very good chance of eradicating this beast from my body initially. The key word is "initially". While it is truly encouraging to read of all the survivors of this disease, there are an equal number of people that get recurrances and eventually lose the battle. Typically, as with your husbands case and others, when it shows up again, there's not a whole lot modern medicine can do. One has to decide for themselves what course of action to take or not.

My partner and caregiver Marcia, is the ultimate optimist. She has more positive energy than a bucket full of protons! I've breached the subject briefly concerning the future and the "what if's" but I don't harp on it as it just upsets her. I know, should this occur to me in the future, she would be there with me regardless of what I decide. While I can understand to a degree your husband sheilding you from the details, I can see by your words the pain it's causing you. Certainly, knowing the details of what's going on will help you and him to enjoy the quality time you have remaining. Perhaps that's an approach you can try with him. 

It seems, by your words and description of your husband's attitude, he is at peace with his decision. That alone speaks volumes. I'm not seeing denial in what you describe as much as I see acceptance. He has had 8 months to digest this. Perhaps that is why his attitude is what it is. He is at peace and wants to make the best of things. If I were faced with a similar fate, I very well may make the same decision and choose pallitive care. Of course I hope I don't have to face that situation but again, I'd be lying to myself if I said it's not on my mind. I believe everyone here thinks about it, especially when scan time come around. 

I'm sorry that you got beat up on another forum. People can be so judgemental and cruel when they're behind the safety of a computer screen. By no means are you letting your husband die! On the contrary, you're helping him live the way he wants to and that is what love is all about. Your acceptance is the ultimate act of love in my opinion. In the upcoming months, he will be facing challenges and you truly need to be aware of what's going on so you can help him. There are some great words of advice in the posts to your OP. Perhaps sharing them will open his eyes and enable him to open his heart and mind to you so you can be there for him in a greater capacity.

Positive thoughts and prayers.

"T" 

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

is beyond belief.  Try not to let it bother you.  You certainly did nothing wrong.  Your husband is not a child or intellectually challenged.  The only thing you could possibly do is try to talk him into going to the doctor.  My youngest sister is a registered nurse and has my Health Care Power of Attorney.  I've already told her that if my cancer came back, I probably would not go through treatment again.  She knows what I've been through and, I'm sure, would not even try to talk me out of my decision.  I would hope she would never go to the other site you went to.

CivilMatt's picture
CivilMatt
Posts: 2961
Joined: May 2012

Hi Jackie,

 

You and your husband are in a tough place, there doesn’t appear to be any fixit answers.  I would like to tell your husband to fight, but that doesn’t seem appropriate.  I am still trying to figure out life and the fairness of it all.  Stay away from those who cross you, they are poison you can live without. 

 

I am sure your husbands head is spinning just like yours.  I pray for peace for each of you.

 

Matt

Laralyn's picture
Laralyn
Posts: 448
Joined: Apr 2012

Both in terms of your husband's illness, and your experience on the other board.

Maybe a good approach would be to sit down with him and say, "It's your decision, and I'm not trying to change your mind. But I love you, and I don't want to see you feeling sick. There are things a doctor might recommend to help you feel better. Let's get the most out of the time we have, and that means trying to keep you feeling the best we can for as long as we can."

That might get him to go to the doctor for a check-up, and could lead to recommendations for medications that would help with the cough, etc.

I'll be thinking of you both!

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

I guess it seems unfair he did not consult you about his decision to NOT do anything before HE decided to NOT do anyting ...but he did finally come out and tell you.  The way I read and understood your post is he has made a decision and he is fine with that decision and you do not like his decision (which I totally understand) and are trying to convince him his decision is wrong ..thus the appearance of denial, but it may just actually be him not wanting to fight with you on this issue in his final time left (I will say it wold be easier had he included you and explained to you why he wants to proceed this course and not fight, you do at least deserve that as his wife of 21 years I would think) ...but it's obvious you love him and with 21 years he loves you too.

I guess my advice is accept his decision but just confirm one more time that is what he wants and ask him to look you in the eye when he confirms it ...if he doesn't flinch ...then just be there fo him.

 

I'm sorry ou have to o through this .

 

Best,

Tim

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