Stage 4 lung cancer, long term relationship

Brief synopsis: in March 2011 he was diagnosed with stage 4 lung cancer. Never been sick, found it when injured arm/rib was xrayed. Prognosis poor. Nine to eighteen months with treatment. Has had good results from chemo and clinical trial. He developed excruciating back pain in December, which after MRI and CT was diagnosed as spondylosis. No evidence of cancer anywhere. However, has remained in bed for the past three months. Refuses to follow all docs' advice to get up, move, walk, etc. Pain management team did epidural two weeks ago. He improved slightly for a week, then went back to 90% of his day bedridden. I encourage, cajole, beg, plead, nag, and have now become what I'm sure is considered a total bitch about his refusal to try. He says that the back pain is his biggest problem and that if he could just get up and move without that pain, he would feel ok. So round and round it goes. Docs say get up, walk outside, sit in sunshine. He lays in bed and gets angry at me. The docs have diagnosed depression and have prescribed meds which he refuses to take. He takes morphine. Period. Adding to the stress is our relationship. We have lived together for 7 years. Marriage came up a few times, but he was hesitant...long running issues with his adult children...and overall it was ok with me. However, since his diagnosis, I have become overwhelmed with a need to be married. His only response was "I have no interest, no intention of marriage." So, we live together, I am full time care giver. His children visit occasionally even though they live within a 10 mile radius. My time is devoted to him and his needs 90% of each day. I am becoming depressed, withdrawn, and shamefully bitter toward him because he refuses to marry me. Deep down I feel like a hypocritical woman, because I have lived with him and only now make an issue of being his wife. It's just my need to be "that one special person" ...his wife. not a girlfriend. I cringe every time we see a new team of specialists at MD Anderson because the first thing asked of me is "and you are?" He never introduces me so I always reply "I'm his girlfriend." last night he told me I am driving him crazy and that he has decided to slowly crawl in a box and shut the lid. I contacted his docs yesterday and told them of his despondency. As I type this, he is totally in a morphine induced sleep. I made him get up and tried to get him to drink something, anything...the fridge is stocked...my concern about the morphine intake was confirmed when he went in the bathroom and vomited. This only happens when his behavior/sleepiness points to higher than prescribed doses of morphine. I am tempted to take his meds and dispense them as ordered, but what right do I have? I don't know his pain and if that's the only relief he gets...this is way too much for anyone to read. I guess I just need to vent. God forgive me for not being a better, more loving and supportive woman to this man I have loved for so long. By the way, he is 54. I'm 55. Never smoked. But cancer never makes sense, does it?

Oh I am so sorry you are having to go through this.  It's a shame you can't talk to his children and see if they can help more.  I don't know what to tell you about the marriage thing.  It's sad you are coping with all of this without the benefit of being his wife.  It just seems pretty selfish of him to me.  He also sounds like he's doing the morphine more for the high than for the pain.  If he's vomiting after dosage, then I think you'd better be talking with the doctors about it.  He's abusing his drugs, and sad thing is, when the time comes that he really needs assistance for terrible pain, he may be already so used to the pain meds, that he'll have a hard time finding a dose to stop the pain.  Do you have any legal authority over his medical care?  You should think about that, and he should too.  I also would let the doctors know he is not taking his anti-depresents.  His doctors need to talk to him.  You need to print out what you just wrote here, and let his doctor read it.  Maybe without him being present.  But, the doctors need to be aware.

You also need to take care of you.  This is going to be a long road for you, made even more difficult by not being his wife.  Like I said, I think he is abusing his morphine, and he's going to be mad at you for letting the doctors know.  It's almost like you are an abused wife.  You have no control.  I don't know what to tell you other than you must not allow him to let you feel depressed and withdrawn.  I don't think you are shamefully bitter towards him because he won't marry you.  Maybe you are feeling that way because of the way he is treating you.  If he were showing you love and devotion and compassion, you would not be feeling so desperate to marry.  Instead, he treats you as you don't even exist around his doctors, he tells you, that you are driving him crazy, and he won't take his anti-depressants so he will feel better, AND he is abusing his morphine for the high.

So, I do believe you need to have an honest talk with his doctors.  I truly sympathise with you and I send you good thoughts, and prayers for strength.  Please, please remember to take care of you.  You are all that is going to be left once he is gone.  And, you will need all the compassion, strength, and love to go on without the man you have loved for so long.  He certainly isn't making it easy on you though.  With my lung cancer diagnosis (stage 3) I was more concerned about my loving husband than myself.  You are worth being loved dear.

May God's Grace guide you through these trying times, and may you feel His strength and love.

I can't express what your response means to me. As I read it, I broke down and cried. Which is something I rarely do, because he asked me not to. He needs me to be strong, not emotional. I shared a bit of what I wrote, and then a few snippets of responses I received. The thing he remarked on was the morphine. He said that if I spoke to any of his docs behind his back, then that was a deal breaker. He would quit going and I could have them, because obviously I needed them more than he does. So...

I'm glad you wrote back.  It's sad to say, but I guess it's his road to travel, so you can do nothing but be there for him.  It sounds like he's going to live this out his way.  Who are we to say any different.  But, you are the one who will survive this.   In my own thinking, I always thought I would be okay, because I would be rid of this heavy body, all that holds us to this material world and life, and I would be in Heaven which is my home.  Therefore I think it is so much harder on those left behind.  When my mother died, I was devestated, it's been 5 years, and I am still so affected.  I cannot imagine if my husband, my life would pass.  So, I know after I am gone, my husband will suffer.  I will try EVERYTHING in my being to make that easier on him.  I am 57, he is 66. 

So, dear Ladyblue ( I love that song by Leon Russell) I will keep you in my prayers that you remain strong, and that He helps you through all of this.  It sounds like you are doing all you can for your boyfriend.  He has asked you to be strong for him not emotional, but you need him to be kind to you.  I hope he sees your love, and realizes what all this is doing to you.  I hope he sees you are only trying to help, not be critical.  I wish he would take his anti-depresents, that would help so much.  I know when I found out I had cancer, all I could this was CANCER,CANCER,CANCER.  I got some xanax and took it as needed.  Let me tell you, it helped so much.  Maybe if he doesn't want the anti-depresents (they take about 2 weeks to kick in and make you so tired) he would consider xanax or ativan which are anti-anxiety meds.  They don't tire you out, but they do ease your mind, and make things tolerable.  You don't have to take them every day, but when you want them.  They sure helped me, and take about a half hour to kick in.  Maybe if you explained it to him that way, he'd consider that.  I know I didn't want anit-depresents, but the anti-anxiety meds worked just fine. 

I know this is so hard on him.  I do really know that.  No one can tell anyone else how to act with this diagnosis.  Like I said, we all have to travel our own road through it.  So, all you can do is be there.  Hopefuly he'll appreciate all you are doing, and see your love for him.  After all, love is all that matters, and you so obviously love him deeply.  I pray for him feel your love, and I pray his travels be peaceful.

Take care, and keep in touch,  Byrd

Boy can I relate to you.   My boyfriend of 11 years was diagnosed with Stage 3 pancreatic cancer February 7, 2012. He is 62, I am 52.     Like you, the subject of marriage has come up in our past, but due to issues with his only child, who is 36 years old, we have never tied the knot.  I know how humiliating it is to be asked how you are connected to the man that you are doing everything for.  Significant other just doens't have a very pleasant sound, does it? 

I have even had issues since he became sick with his ex-wife wanting to be friendly with him again.   When he first got out of the hospital following his Whipple procedure, she started calling him and wanted to come visit him, but said that she "didn't want any trouble".  I told him that I thought we were all adults and we needed to get over ourselves, and that I would not mind if she came to visit him.   However, she won't come to our house when I am here, but she has offered her services to drive him to and from his treatments four days a week.   Not if I can help it!  The daughter never calls to check on how her daddy is feeling, only when she wants to borrow the lawnmower, etc.   Usually just when I have time to mow out yard!.   Makes me want to pull out what little hair I have left. 

I really feel for you in your situation, and anytime you feel like venting, I have broad shoulders and thick skin.    So feel free to fire away!

It does seem we are in a similar situation. I find myself feeling more angry and depressed every day. His scan last week shows progression of the tumor, so now he is going on a second clinical trial. It will really become hectic with the new treatment schedule. His ex wife knows better than to come to our house. She caused trouble when he was first diagnosed, but has let go of it. His kids visit every couple of weeks, which is sad because they all live within10 miles. I just want to scream. Because of his pain, he has been put on Methadone, which puts him in a coma half the time. And he still won't fill out beneficiary documents, advance directives, power of attorney. Nothing. I have faced the reality that he might never do it. Just remain in denial. And I'll be told to step aside. Thanks for replying. Keep in touch!

Hi Ladyblue,

I am so sorry you have gotten yourself in such an unpleasant position.  Please bare with me, I am not running you down.  I just have never understood why a woman would live with a man that did not have enough respect for her to marry her!  A relationship or a marriage cannot thrive without respect, trust and communication.  It is not based on a one sided love.

You have let this man use and abuse you and now it sounds like you are probably going to lose everything you have worked for.

I would suggest you see a Lawyer as soon as possible and tell him this story and ask him if this guy dies or throws you out....if anything can be done to keep you from losing every thing.

Then, tell your guy that you realize he is sick; but you are tired of the way he is treating you and not following doctors orders, etc....tell him you are doing your best to take care of him twenty four hours a day and things have got to change;  he can either have respect for you and marry you, or you are getting out of there.  You are still young enough you should be able to find someone to respect you, love you, marry you and and make you happy.

No, I am not an old maid.....my darling husband and I have been married 56 wonderful years!

Please have a positive attitude, stand up for yourself, stay strong in mind, body and soul.  Have hope and faith for a brighter future.

Prayers and blessings,

B

 

Ladyblue7

Now I don't feel so much like the lone ranger.  I have actually had a sort of a "Come to Jesus" talk with my fellow.   I let him know how much it hurt me to have his ex-wife involved in this , since she use to have restraining orders to keep him away from her (and subsequently his grandchildren, which was the whole point anyway).  He has never done anything to hurt her, except divorce her when she began messing around with other men, and I think he sees, finally, that he doesn't need her help now.   Hallelujah!!

I know it is hard to talk to someone in a situation like we are in.  These guys are dealing with a lot, but don't seem to realize that so are we.   My guy is not an easy person to talk to, but when I see an opportunity, I grab it.   We are going for a CT scan today to get prepared for radiation, and he was more than happy to have my dad drive him to the Cancer Center.   I work near the Center and will be able to meet them there, and I think we will all be happier that my dad is driving him instead of his ex!!  I know I sure will be.

Please take good care of yourself if you can.  I know that is hard to do, and I myself get tired of hearing people tell me that, but I know where you are coming from and understand how hard it is to focus on yourself right now.    But do the best you can and let me know how you are doing.   I am here for you any time. 

 

 

It is heartbreaking all the way around. And at the end of the day I know that, while being treated with disrespect, I am not fighting for my life. I just wish he didn't find it so easy to yell at me or make me the bad guy. As I type this, I am reeling from some hurtful things he said earlier this evening. He said he's sorry, then goes back to watching tv. My plan is to leave tomorrow afternoon and be gone all weekend. Perhaps getting away will recharge my batteries. We shall see.

Just wanted to touch base with you.   I hope you are handling your stress ok.  (easier said than done, I know).  I wish I had some clear cut answers for you, but I am sorry to say that I don't.   But I was thinking about you today , and I just wanted to say hello and let you know that I am thinking about you.  If you need to vent, let me know.   I understand how important it is to let it all out sometimes. 

Hang in there girl.

Linda