How can you all sound so sane, I am going crazy!

[Guest akmaryann]

My husband was diagnosed with Stage 3A lung cancer in April 2005. There were 3 tumors at that time. One of the tumors was wrapped around the aorta which meant agressive chemo and radiation to shrink the tumor and then do surgery. Ideally the surgery was to happen in the first part of June. I watched him continue to smoke and drink and now was open to get any and every kind of pain killers he wanted. (I need to mention that he was already taking 180 percocet a month for back pain) We have oxycontin, oxycodone, fentanyl patches, marinol, sleeping pills and of course his monthly supply of percocet. He postponed the surgery for an extra 3 weeks and by then there was tumor #4 attached to his heart. The surgery was a great success, awesome surgeon, which involved the removal of his left lung then followed by more chemo and radiation as they were concerned about the margins. He really didn't have a lot of problem with the chemo as far as nausea. He had lost about 20 lbs. prior to his surgery. He is now down about 50 lbs. and though the MRI & PET/CT came back clean he stays in bed at least 20 hrs. a day, gets up only to smoke and goes out only to pick up alcohol and cigarettes (which I refuse to buy for him). He has the whole world feeling sorry for him, but I can't anymore....he is doing this to himself. Even the surgeon said that he is more concerned for me than he is for my husband. He has recently had oxygen delivered which causes me to sleep with one eye open as the fear of smoking with oxygen in the house and also his mood swings from the medication and alcohol make him not a nice person to be around. He doesn't thank me for anything I do and says that nobody knows what pain is, only him. How do I live with this? Have any of you experienced anything like this, I don't know what to do....

Mary Ann

Anchorage, Alaska

[Ry]

Well first of all, who's sane? One thing for sure is this disease will drive you loopy, patient and caregiver alike. I am so sorry for all you are going through. I don't have answers, I think you both need someone professional to talk to. If he won't go, you go for you. The way you describe his health bothers me, if he is clean, he should be feeling better. It leads me to think that his staying in bed is depression rather than illness. Hang in there, vent here anytime. That's what we're here for.

Welcome.

Rochelle

[Don M]

Hi Maryann:

I am not a caregiver. There are caregivers here that will soon post, I am sure, to relate their experiences to you. I hope your husband pulls out of his funk. Maybe he should add an antidepressant to his meds. There are oncology social workers at most major hospitals that may be able to help. I think the social worker would help you as well as your husband. Perhaps you could both attend conseling.

I guess if I were your husband's caretaker, I would insist that there be no cigarette smoking anywhere near the oxygen. I guess an acceptable mitigation would be to have a smoke room where there is no oxygen present. The technician who delivered the oxygen hopefully knows about your husband's smoking and briefed him on the saftey issues. He should have briefed you too. If your husband does not follow the rules, you will have to enforce them.

Anyway, I hope something good happens soon for you and your husband.

Don M

[Donna G]

I agree. Depression is so common with lung cancer treatment. Just think - to be told you have a disease that "every one knows" is fatal, to go through chemo and radiation which is doable but wipes you out, to have surgery that includes breaking ribs, cutting the nerves that run along the ribs, being told you have to quit your addiction, ( cigarette smoking is one of the most powerful addictions) etc etc etc.

All of this is not only very trying on the patient but is also very trying on all family members especially the "care givers".

Sometimes getting on an antidepressent is enough but some counselling or support group would be great not only for him but for you too. I am glad you spoke up, just having someone who understands can be of help. Just want you to know I am nearly 8 yrs since I had surgery and not like those first few months but I still am very aware I had thoracic surgery , it still is painful at times but not so much that I am not very greatful for having had it and survived. Keep us posted. Donna G

[carolhg]

I am so sorry for the anxiety that you are living with. Do something about the smoking near the oxygen because that puts everyone in the house in jeoprady. Please take time for yourself and get the support that YOU need. I am glad that you came to this site to vent and to express your feelings.

[Maryanne]

Hi MaryAnn,

So sorry for all you are going through. But when you read Donna's post, she certainly has a point about all he is going through.

I am also a caregiver, but I did not experience anything like you are. It does seem like he can use professinal help or anti-depressants. There were so many members here who have gone through depression and the meds really helped them cope.

I don't like the idea of how addicted he seems to be with all the medication. There is no reason for all of that. Joel took pain medication when he really needed it, then just wean off of it as he was feeling better.

Please make sure he is not smoking around the oxygen. One of our members who has since passed on(bless his soul) was smoking around his oxygen and winded up in the hospital with burns on his face and his body.

MaryAnn, I really symphasize with you. This has to be so hard, to watch his demise after he seems to have gone through the worse and is not helping himself to heal mentally. If he just wants his drugs and keeps sleeping, then to me ( as Iam no doctor) it does seem like somekind of depression.

Is there anybody you can talk to, a member of the clergy,a close friend. who might be able to talk to him? Do you have children?

We are always here to support you and listen to your vent. It is good to get that out of your system.

I just hope you have someone close to you who can help you through this. Whatever, you do, do not take his moods personal. That is on him, not on you.

Keep us posted.

Maryanne

[Leslie221]

Welcome, MaryAnn,

My question to you is: how have you worked your relationship with your husband in the past? Sounds like health issues and his willingness or not to take good care of himself has been an issue long before lung cancer entered the picture. Sounds like he is actually just doing what he's always done.

I agree that outside counseling is probably going to get you the best resuls. Tell his doctors what's going on and insist they help you protect YOURSELF from a cigarette/oxygen disaster.

Keep us posted.

Leslie

[Fay A.]

I have a pretty good idea of the amount of pain your husband is in, and I believe him when he says it is intense. But with all the medications he is taking, adding in the drinking, I also believe that part of the pain is related to some of the side effects of the medications. Perhaps his Physician/Pharmacist can look at what he is taking and evaluate if there should be a change in the medication(s).

I don't blame you a bit for your decision to refuse to buy cigarettes and alcohol.

Re: O2 and the smoking issue. I was told there has to be at least 10 feet between me(on O2) and any open flame. If your husband refuses to respect the basic safety issues, then you have limited options. But if you choose to stay with him knowing he is doing this, then you may want to invest in addditional smoke detectors, home fire extinguishers, and make certain that you have an escape route in advance of the potential fire that could result. I wish I could find a post written by one of our much loved members (DeanCarl, now deceased) where he details his experience with smoking and Supplemental O2; Serious burns to his hands and face. If you can find it maybe you can print it out for your husband to read.

And we only sound sane because you don't know us well, yet.

[Don Wood]

Welcome to the website. I don't understand your husband at all. It seems to me he has a death wish. He is doing everything to self-destruct. I see no will to fight the disease. I feel very sorry for you as his caregiver, because I do know how much strain his behavior is having on you as well as the lung cancer. Sorry you have to go through this. Don

[shirleyb]

Maryann,

I am sorry you are going through this with your husband.

Not alot you can do to help someone when they won't help themselves. From what you have written your husband is not only addicted to cigarettes and alcohol, but to pain meds too. Scary place to be.

Drug addicition, be it smokes, drink, or drugs is an ugly thing.

I hope you decide to get help for yourself first and foremost.

My heart goes out to you at this time. Maybe a 2 x 4 upside his head will help him to wake up to his actions and how destructive his actions are. Under all the problems he has, he must have some good qualities otherwise you would not still be there for him.

Best of luck in all that you do.

Shirleyb

[dadstimeon]

Hi Maryann,

Your husband needs to help himself first and foremost. No one can do it for him. He is very fortunate that he was able to have surgery, which a lot of us can't. Sounds like he needs professional help in dealing with all the medications, alcohol/smoking issues. He's playing a game of Russian roulette--a case of self inflicted wounds. As far as smoking around the oxygen, that should not be allowed, that puts everyone at risk who lives there, I myself would not compromise on that. Also please seek help for yourself, he is really being selfish and it is not fair to you at all. Hope this helps. Prayers for the best.

Rich

I'm shocked and shagrined when someone thngs I might be sane.

[kamataca]

Mary Ann,

Welcome to the site! I hope you are able to find a bit of sanity here.

When my Mom was first diagnosed, she went into a depression. She's MUCH better now, with a very positive outlook, but those weeks almost killed me.

Along the way, these kind folks here taught me that we can't force our loved ones to do anything. We also need to take care of ourselves, or we are no good to others.

I hope you can find some peace in your home and with all that is going on. Let us know how it is going, OK?

Kelly

[Donna]

((((MaryAnn)))) I am so sorry for the pain you have to endure..I could only imagine what your husband is feeling, as I was a caregiver for my brother..I knew his pain, and also knew he was so afraid of the addiction to all the pain meds..I have another brother that is a recovering alcoholic, and a sister who is a recovering drug addict..Thank God they are clean for many years..The HELL in our home was just too much to take on a daily basis..They did nothing to help themselves, till it was right for them..Your husband is not only going through his disease, but also his addictions..You must get help and counceling for yourself, first and foremost..If you are getting sick over this, as my family did, there is no way you can help anyone else..You must first Take Care Of YOU!! My prayers are with you and your family, hopefully your husband will come to terms with all his problems..

God Bless You..

Donna K.

[midge]

Mary Anne,

I echo the sentiments of the others posted here. It sounds like your hubby has had a death wish before cancer....get counseling for you so you can get through this nightmare...he sounds like a handfull!

[J.C.]

Mary Anne,

Welcome,

hope the answers you got help you in

your need.

Take care of yourself and keep us posted,

please.

J.C.

[Ladyintheglen]

Maryanne,

Have you told the Dr.'s that your husband is drinking on top of the pain meds? Maybe they or a social worker from their office could talk to hubby about in-patient alchohol treatment. He probably can't be weaned off the pain meds but getting him off the alchohol and cigs would be a great help to his health.

You are definitely going to have to put your foot down as far as smoking around the Oxygen. Tell him that if he is going to insist on smoking then do it outside. You can't make him quit but you can put down some ground rules.

Yes, I do know what it is like to not receive a thank you for anything that was done for my husband. Not only that but I get complaints about how I don't do anything right. I prayed for peace (as did everyone on the board). I couldn't understand why each day got worse. The problem was that God was handing peace to me...I just wasn't taking it. I had to accept the peace that was being offered. Then I had to make a decision to be at peace. Now when my husband complains I try to not get upset and generally answer...I'm sorry you feel that way. I refuse to accept the blame anymore. I put it in his lap. It's the way he feels...not the way I'm doing things.

I know this is long but there is one more thing I need to address. Sanity is a rare comodity during a war. We are at war with LC. We merely have moments of sanity. Thank God there are many of us on the board. The ones that have a moment of sanity help those of us in the insanity.

Please keep posting we care.

Cheryl

[Snowflake]

My heart goes out to you at this time. Maybe a 2 x 4 upside his head will help him to wake up to his actions and how destructive his actions are. Under all the problems he has, he must have some good qualities otherwise you would not still be there for him.

I side with Shirley, especially about the 2 x 4. It is definitely time for an intervention and a Come-to-Jesus meeting. One thing about drawing a line in the sand or making threats - you need to follow through.

If you say no smoking in the house/around the oxygen, you need to stick to it. If he's to smoke outside and it's -30, he needs to be outside to smoke, not "allowed" to be inside because it's so cold.

He's being childish and immature. Does it hurt? Yes. Is he the ONLY one who knows pain? Hell, no!

You should set up an appointment with a counselor who deals with dysfunctional relationships. He is the controlling partner and you need to find ways to deal with how he "works". Doesn't mean "shut up and put up", just how to turn the guilt trips back in to your travel agent spouse and not take them. Bottom line is that in order for someone to make you feel inferior, you have to give them consent. Stop giving the consent.

Having seen how relationships with dependent personalities work, I would hazard a guess that you are dancing a dance you've known the steps to for a very long time. If you don't want to dance the same dance, learn some new steps.

Good luck to you and yours. He really sounds like he needs a spanking...

Becky

[bunny]

I am with Becky on this one. if he can't "hear" you, is there someone else that might get through to him? the smoking/O2 issue is not just about him, a lot of people are in jeopardy there. just like he needs to decide to help himself, you may need to ask others to help you.

whatever happens, you need a way to refuel. there is too much being asked of you. you need your own support in this, as well as support for him and his treatment.

as for my sanity, it sends a postcard now and again but otherwise, we've parted ways.

xoxo

bunny

[Guest akmaryann]

You are wonderful. You are probably right, there is no sanity in the situation. I am just so used to hearing that he has no abuse problem and that it's me that needs help. That is his addictions talking. The surgeon had a social worker call me and she wants me to check in on a regular basis. They have another major concern and that is that he has a gun fetish. There are 18 guns in the house and that is another big concern with the amount of drugs he is on. They agree with Shirley's comment that he needs a 2 X 4 to the side of the head. It is true, there are some people you can help and some people you can't. He needs to help himself before anyone else can help him. With the addictions that he has and did have prior to the cancer I think his pain goes a lot deeper than the illness. He uses the "big C" to get sympathy from people now, it works for him. I refer to it as his Pity Party. Maybe if we had a longer history together I would find it easier to understand. We have only been together for 5 years. When I met him he had been through the program for alcohol, had had a DUI, a bankrupcy and was clean. I respected that he wasn't drinking and didn't drink myself or bring alcohol into the house. I still don't!!! and I'm not the one with the problem. He started drinking again but hides it...I can smell it all over him! When he was diagnosed with cancer I quit smoking....he didn't! Something is wrong with this whole picture. Thanks for being here for me. It sure helps to vent!

[bunny]

for yourself, investigate alanon. cancer or no, it's hard to live with someone who's drinking affects their life and yours so negatively.

I am with you, girl. hang in there!

xoxo

amie

[Guest akmaryann]

As many of you suggested I did talk to his internal medicine doctor who pulled a letter out of his file that he had sent to all the other doctors involved in regards to his concerns that my husband was abusing the availability to drugs. It also told of his history with drug/alcohol abuse and suggested a social worker/possibly rehab and then mentioned his concerns regarding his behavior. He said that he was concerned because he knew of the verbal abuse that I was dealing with. The only doctor that has done anything about the information was the surgeon who told him that he needed to be weaned off some of the meds and called a social worker. My husband said that he doesn't understand and he will not go and see him again. In the meantime another one of his doctors has just increased his dosage by 1.5 times. Now he is vomiting a lot more than he was and losing more weight. We had a really bad night this week and I was ready to leave. He apologized in the morning and said that he is going to stop drinking and smoking but didn't say anything about the meds. That was 3 days ago and I haven't seen any changes. He hasn't been in my face though...so I think it just meant that he would try and hide it better. Thanks for listening!