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Caregiver-Spouse with cancer is mad at me

allackey's picture
allackey
Posts: 19
Joined: Oct 2009

In October I posted the same subject; but now that my wife is at the end of her chemo I now need some caregiver support and advise.

After her last chemo, she has portrayed me as "not being there" for her, being basically selfish, and delegating duties to others. She said she just wanted me to be there for her. I did go on a missions trip and it was something that she supported and told me to do at the beginning. I was absolutely blindsided by her feeling and statement. In my eyes I have been there, and have considered it my honor to care for her. I have taken care of us and our children and have done it with care to be humble to be sure that nothing is "about me". The bottom line is that she is truly so far from the truth, that I want to find out if this is typical to go through.

I wonder if deep down she is coping with the fact that I don't "have cancer too" and in that respect am not with her?

Wow! Has anyone been blindsided by their partner with cancer? I feel like I've been hit with a 2x4 board!

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I had cancer about 7 years ago. And I will admit that I was not rational alot of the time. But I also realize there are two side to every story. There is no way you can understand what your wife is going through. And she proubly does not know of all the things you are doing to keep the family going. I could sit here and try to guess what the root of the problem is but it would do no good. There comes a time for an open conversation between you two to get at the bottom of her anger. And if it requires an outside therapist then I am sure her Oncologist can arrange that. Without getting at the main problem here this could go on for years. Her fear and hate will only build upon itself. Cancer can easily ruin a marriage and pull a family apart. And I don't care how good anyone thinks their marriage is or has been. If an open conversation is not in the cards then seek help. Best wishes Slickwilly

appleyellowgreen's picture
appleyellowgreen
Posts: 38
Joined: Sep 2009

I'm in your situation. My husband is going into his second chemo treatment. He has already had three surgeries since 2005. Small cell lung cancer. Nothing is ever enough.

Once you really get that - once you really get that it HAS to be all about her - it gets easier. It's not you. I have no idea what your entire situation is. I don't know if you go to work and have someone come in to stay with your wife. I don't know how old your children are. I don't know what your wife's side effects are/were. There are so many different elements to being a caregiver, a patient doesn't see the whole picture. Because the patient only sees his/her own needs.

I know my husband will yell to me from the bedroom when I'm in the living room. It always sounds urgent. Sometimes, all he wants me to do is turn off a light that's bothering him. There are a lot of nonsensical things that take really irritate patients. Light. Sound. Taste. Touch. They're super sensitive. But because I don't want to miss the one time he really needs something, I run. It really aggravates me, but I smile.

I save my arguments for motivating moments. My husband has a tendency to be lazy about his recovery. Cancer is something that is happening to him and he is pissed off. Understandably. And I am pissed off that he lies around all day instead of trying to get stronger. After the initial effects of a chemo session wear off, I think he should take the initiative to build himself up.

I'm always told I don't understand. I'm always told how much mental pain he is in. I'm always told I can't feel what he's feeling. I agree. But it works exactly the same way from our side. He doesn't understand what I'm going through. He doesn't know the horrible thoughts I have every night when I go to sleep or how I dread what the next day will bring. But I put on a happy face.

I can do this because I have let go of the guilt. No, I'll never do enough. I'll just do all that I can. I have no children and I work from home, so I am with him all the time. He usually apologizes for his anger and selfishness at the end of the day - it does make a difference, but I don't need the apology any more. I know I'm doing all I can. He can't send me on a guilt trip any more.

I think you need to examine your behavior and see if you are falling short anywhere. I have a feeling you're not. But I agree with Willy that you need to have a good talk with your wife, and you need to go into that talk prepared. The hospital where my husband is receiving his chemo has psycho-oncologists who will sit down with you and work things out. Having a third, neutral party present to monitor the conversation is a big help. Any family therapist or couples therapist can moderate. But if the facility where your wife gets treatment has anyone - social worker or psychiatrist/psychologist- on staff, see what they can do.

It's tough. You give so much and your not looking for applause, but getting blindsided hurts like hell. I know. It took time to find a new normal in my house. It keeps changing. But I'm a pretzel these days - have to twist and bend to the occasion and need of the moment.

You're not alone.

Apple Yellow

AnnaLeigh's picture
AnnaLeigh
Posts: 177
Joined: Jan 2010

I am terribly sorry to hear that this emotional twist has been added to the already heaping pile of things for you to sort out. Apple Yellow Green went right to the heart of the matter. The cancer patient has absolutely no clue what we caregivers are going through (just as we can only imagine what they are feeling even though we live with them, right at their side, day-in and day-out). My husband could not understand why I would need extra help around the house because he could not possibly know what was going on behind the scenes while he was sleeping off the fatigue of chemo. To him, it was just all of the stuff I normally did anyway before the cancer diagnosis.

Women have a tendency to watch a capable man take care of duties, chores, tasks and problems and assume they do it with ease because men can be so efficient, logical, non-emotional, black-and-white and have pin-point accuracy with which to identify problems. When a man repairs the car or house out of love for his family and wanting to provide for them, all a woman can see is "he was doing his duty". It is possible for a man to actually do the laundry as an act of love, not just as a need to stop running around the house naked.

For many months I did not share my feelings of grief, anxiety and being overwhelmed with my husband because I thought it would be adding to his misery. But when I did, I found out that he shared many of the same feelings and it opened his eyes to how deeply I cared for him. My depth of despair about the situation was only equal to the depth of my love for him. Perhaps by being so outwardly strong and courageous, your wife has mistaken this for a lack of depth of compassion.

Cancer patients become very selfish when their entire focus turns inward in an effort to shut out the rest of the world, deny feelings they can't deal with or in an effort to examine why their bodies have betrayed them and tunnel vision is the result. That does not make it fair to treat us caregivers with so little respect and it does not mean they get a free ticket to be as ornery as they want to.

Anger is one aspect of the cancer patient's process and it can come and go. It can also be a transference on to you for all of the other things she is angry about. You are just a convenient and safe person/outlet because she knows deep inside that you love her. i.e., when children act out only with their parents because they know they will still be loved.

A specialist/therapist in this area is definitely in order. As good as we caregivers are - this one is too big for us to handle alone.

You deserve respect and love for your devotion,

AnnaLeigh

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

I'm sorry you are having a tough time. I was blessed with having a husband who told me regularly that he thought my job as caregiver was harder than his as care receiver. Yet there were still times when he became a little demanding and unreasonable from my point of view. Communication was the best approach for us. I'd ask what it was he expected of me. Then we would talk it out. Often times, we would find that there was a misunderstanding on one or both of our parts. Because women and men often talk different languages, you might want to as your wife what her meaning and understanding is of "just being there for me." For me it means being totally present when you are with me, listening with your whole mind, and being willing to have hard conversations. For someone else it may be physical presence and a whole lot of other things. Also, keep in mind that cancer and cancer treatment can affect your whole being and thinking. Even those of us who are caregivers have a new normal. Take care of yourself, too. Fay

Gracie44
Posts: 2
Joined: Jan 2010

My husband was diagnosed with stage 3 small cell lung cancer in December. He is having extensive chemo and radiation. He always seems to be yelling at me for something. I am scared,too, and he gets mad at me if I get depressed. At first I was really angry because I have begged him for years to stop smoking. I have never smoked. My first husband died of cancer, so this is really hard for me. I feel like I am living with a totally different person the last few months. I can't do anything to please him and most days he just wants me to leave. We also have had some financial difficulties but we are working them out. I just keep telling myself that he really doesn't mean what he says, but some days I just end up crying because of his mean words. He says we are growing apart and instead we should be growing closer. I love him so much and I will always stand by him. I guess the only thing to do is have lots of patience and know you are doing the best you can under a very stressful situation.

junklady's picture
junklady
Posts: 88
Joined: Aug 2009

My man is end stage laryngeal cancer and I am very frustrated and angry. He won't talk about anything. When I ask him what's going on, he says nothing. How can I face what is coming if he won't tell me? I need to know everything so I can keep on top of things. I see small changes and I think he does too. Is it because he does not want me to worry about him? Well, that's all I do. Every little thing is on my mind day and night. If I feel like crying , I have to go outside so he won't see me, He says don't cry, well I just can't turn it off like a faucet. I don't want him to suffer and be in pain. I'm sure there are a lot of concerns going on in his mind, knowing that he is dying. I just can't imagine how he feels everyday. Breaks my heart. I have no close friends, so this is how I get it out. Sorry. Sure am glad this site is here to vent and see how other people feel and deal with life. All we can do is live everyday to the best. I'm glad he is still with me and I tell him I love him ever so much everyday. I feel I'm doing the best I can under stressful circumstances and will continue to do so. I'm strong, I'll make it, whatever it takes.

crose
Posts: 9
Joined: Jan 2009

I feel blindsided as well. My husband has stage IV esophageal cancer and I never know what I'm going to "walk into" when I come home from work. It's hard to deal with the fact that he has this horrible disease, and that we can't enjoy whatever time he has left because of his mood swings. If it weren't for supportive friends, I would feel totally deserted. It is a very lonely feeling.
I really can't understand people who try to put a positive spin on cancer, saying it's the "best thing that ever happened to them". To me, it's the worst thing that can happen, especially from the caretaker point of view.
The only thing you can do is remember to take care of yourself, too. Go on walks, take in a movie, draw or paint, or do some other hobby, even if it's just a few minutes a day. If you don't take care of yourself, you will have nothing left to give.

FlDino
Posts: 11
Joined: Nov 2009

My wife snipped at me a couple of times near the end. It hurt, but then I got to knowing that she didn't really mean it. She did that as a defense mechanism when things happened to her she couldn't control. She knew she was going to die and as strong as she was, she still had moments of weakness, for lack of a better word.

Shake the hurt off and know they are doing it because they maybe are frustrated at something happening to them that they cannot change.

icezam19
Posts: 1
Joined: Apr 2010

I am 59 years old. My husband has had cancer for 13 years. Recently, the doctor told me that our current chemo is only palliative. My husband lost 30 pounds and was on lots of pain pills which made him sleep and he did not interact with me very often. I adjusted to this and found ways to cope as he was pretty cranky and very withdrawn. Now, out of nowhere...for the last 5 days, he is taking a turn for the better and acting more normal.

Remember, I have been his caretaker for 13 years.............up and down, good and bad.
This time, I am frustrated by his "return to my world" because he is taking up right where he left off. Problem is............I had to adapt to his recent downtime and re-structured many things. Now he is "un-doing" things and doesn't realize that this is a strain on me. I am so embarassed to write about this as I know I should be rejoicing. Frankly, my head is spinning and the constant up and down pace is maddening. I just want a little peace and maybe just a teeny tiny focus on me for one second.

I spent all of the last 13 years focusing on my husband and I thought there would be time for me when he was gone and I was grieving. So I postponed "me time." After all, the dear man is dying. How dare I make it "about me." Again I am so embarassed to post this. I DO LOVE HIM but I am getting weary.

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

Thirteen years! How many halos are there hovering over your head?

After all that time, I don't need to remind you that just like the bad times, the good times are usually temporary, too. Stay your course and you will be fine, eventually.

I'm glad you brought this up, because I feel ashamed that I kind of resent my mother's good energy days when I should feel happy. Then when she goes down again I become so attentive and the resentments melt away. Don't know where this cycle comes from, but it's real. Don't feel embarrassed about it.

There's a thread here where a long time patient (Hondo?) had an aha moment about everything his wife gave up to take care of him through years of treatment. In general, I think men have little idea of what caregiving is all about unless they have to do it.

Hondo's picture
Hondo
Posts: 5648
Joined: Apr 2009

I tip my hat to all of you who are caregivers. As Barbara said I thought that I was going through hell with my first cancer treatment and maybe I was, but the problem I did not see was that I was putting my wife caregiver in hell and leaving her there. I was a very nice guy but going through treatment changed me so much that all of my children moved out of the house and none of our friends would come over to visit.

I did not understand all of what was going on in my life, and that it was I who was running everyone away from me. That is one reason why I love my wife so much more today then ever because she stayed, she never gave up on me when I needed her most she was there. When my cancer came back the second and third time it was different because I understood the affects of my cancer on her and we decided that we would go through this together, it made a big deferens in our life and we are so much closer together today for it.

Caregivers don’t give up on us; you might be all we have in life. God bless each of you who have set your life apart to take care of us who can not care for ourselves.

Thank you Barbara Thanks you icezam and all other Caregivers

AnnaLeigh's picture
AnnaLeigh
Posts: 177
Joined: Jan 2010

Thank you for understanding that caregivers experience such a drastic change in their lives also. Right along with the loved one they are caring for. In my experience, the majority of the frustration comes from have to WATCH the awful times my husband must endure and not being able to CHANGE anything on a permanent basis. I can only ease the symptoms and hope the treatments and his body will do the rest.

None of us were prepared for this experience and none of us received our instruction manuals with all of the answers after diagnosis.

We all do the best we know how to do - cancer patients as well as caregivers.

See my post called - The Perfect Storm !!!!!!!!.

Best wishes to all who sail with us and among us.

AnnaLeigh

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

I was my husband's caregiver for 6 years. I can't imagine doing it for 13 years. I was exhausted when my husband passed away. Please, don't feel guilty about any of the feelings you are having. I think they are pretty normal whatever that is. When I shared some of those thoughts and feelings with my husband, I told him how guilty I felt. He really set me straight. He always said I was in a tougher job as caregiver than he was patient. I even felt guilty about trying to be sure that I knew where everything was that I would need when he was gone. As much as I didn't want to think about that time, I did. I think that is just human nature. Take care. Also have you called hospice? That's a hard move to make, too, but they really do help. Most even allow you to receive palliative care now, and prefer that you contact them early. Fay

bsn
Posts: 2
Joined: Aug 2010

I wish I could take away your sadness and pain and guilt, just for a day. I too wish sometimes something, sometime could be about me. I'm tired of feeling guilty, bitter and tired and I've only been at this for four years 3 months! Do something for yourself, really!

Dotsmom
Posts: 11
Joined: Jun 2010

Please don't feel embaressd, I'm sure most care givers feel this way at some point and I certainly have no advise to give, we've only been at this for 7 months. But I can relate to the feeling of putting my needs off for everyone else's sake. In additon to my husband's squamous cell cancer, we have a beautiful 8-year-old daughter who had some emotional problems which have now been brought to the for front by her father's illness. At first I thought when he's better I'll take care of me, well he's probably not going to get better based on a second surgery and the plan for more aggressive chemo which may give him 6 months to a year. I sometimes feel like the clown at the circus spinning the plates. By the time I get the last one spinning, the first needs to be spun again.

I hope writing and getting things off your chest helps, I come to this site mostly to read, sometimes have my good cry for the day and get on with things. I wish you peace and hope and pray that I will have your attitude and strength in the time left with my husband, thanks for putting things in perspective-without even knowing it.

endiman
Posts: 1
Joined: Apr 2010

I know this posting is late but it's been over a year since I lost my wife to cancer and haven't been able to face some of these issues. It was a long three year battle. I went through the same thing you did. Seven months after we discovered my wife's cancer and got her stabilized on treatment, I felt I needed to go to India where we support an orphanage of 500 kids. Although my wife was supportive, it was different when I got back. I've since come to learn that fighting cancer is the only thing that really matters in a cancer victim's life and any other activities that doesn't directly support that effort is considered not really caring or letting the cancer victim down. I wanted to take my wife on short vacations or anything to get away and have a glimpse of prior normalcy as the stress of being her caretaker, earning a living, worrying about insurance and bills really took it's toll on my both physically and mentally. She wasn't willing to do anything until she won her battle with cancer. Sad to say we never got our chance.

Hang in there. She needs whatever you can give her and I know what you're going through.

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

My husband was diagnosed with sc lung cancer this last April. It hit me hard. I guess the shock period is over and the fighting to defeat this has begun. He has had 4 rounds of chemo and has shown a 50% reduction in the cancer cells in his lung, liver and lymph nodes. For this I am extremely grateful to God and my husband for having such a positive attitude! I am also grateful that he tolerated the chemo so well. We were told about the fatigue, nausea and "chemo" brain side effects.
I remember the day that we were told, all I wanted to do was take his hand and run out of the doctors office and start making the most of the time they said he had left! But before we left the hospital, we were handed a stack of appointments, for scans, for MRIs, for labs, for chemo... I've adjusted to that and realized that in order to get any of that time, all of these things had to happen.
At this time we are waiting for his next scan to see how well the chemo worked this last time, and his doctor told him that this may be the last round for now, and if the scan shows good results, he may be looking at whole brain radiation. Another scary thing!
When this all began, I told him that I would be with him every step of the way. We have been married for 29 years. I've spent every minute of everyday with him, loving him, encouraging him, telling him that his bald head is sexy! I do everything inside and outside of the house. I've sat for 8 hrs next to him through his 3 day cycles of chemo, because he asked me to. So you may ask, what's the problem? It's not easy giving all of yourself and very rarely getting affection, caring, concern from the person that you would give your life up for. When I see him having conversations with the other ladies in the chemo lab, he doesn't have "chemo" brain, but he can't remember something I may have asked of him. He doesn't have "chemo" brain when it comes to baseball stats and who won the Nascar race. I fell a week ago, and hurt my side and ribs where I could hardly sit, stand or lay down, but could not go to be seen since his chemo cycle was beginning. We discussed perhaps going one day after his treatment, but when his treatment was over, all he could think about was where we were going for lunch. I know, I know, my therapist says that I have to take care of myself. It just would be nice to see or feel some caring from him once in a while.
Anyway, just wanted to thank you all for discussing your feelings. You would not believe how long it took me to find a blog or discussion board that addressed this topic! Every site was about and for the cancer patient, or detailed what we as caregivers, must do. I am looking into attending a local support group. I don't want to have this guilty feeling, and I want to be there for my husband.
My prayers go out to all of you.

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

No, you are not alone! Many here have been or are going through many of the things you mention. All I can tell you is what you already know. This is hard. My husband often said that it was harder on me than on him. I don't know that theat is true, but it is tough. Hang in there. It sounds like your fight is just beginning. Take care, Fay

lilli1020
Posts: 114
Joined: Jul 2010

I hear you loud and clear hon....Do I ever get a thank you??? NO. Does he talk to me about whats going on inside of his head, or ask me about my thoughts? NO. Does he take his frustrations out on me? YES. Did something taste good to him that I slaved over because he wanted it? NO.

But I dont have terminal cancer, pain, no appetite, depression, fear of dying, no energy, no muscle mass and I don't have to depend on someone for everything these days.

Yeah, I get selfish and the :OOOO poooor meeee" sometimes, but when I tell him I love him and hold his hand, he does too. He is the one who may never see his beautiful daughter get married, never see his grandchildren, may not even see another beautiful fall or ski down a snowy slope again. He feels inferior that he can hardly walk to the bathroom, much less pay a bill with his medicated mind, or talk to the creditors or take the car for an oil change or take the garbage out to the road...bla bla bla....I am rambling.
When I begin to feel slighted, I put myself in his shoes, and then I dont feel as bad as I did. Then I pray for stength, healing, peace of mind, and my family...and my sanity.
Its the only thing that gets me through....God is always listening!

Bless all of you and take care of you!!!
Gayle

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I could not have said it better, even when he yells or does not like something I know he has other things on his mind. I know when is insults something , it is himself. I know he wonders what I will do when he is gone, He wonders what if everyday and I would bet every minute. So I know his yells are not at me . I just look at him and remeber the man I love it still there. That if ever he needed someone to love him , he surely need me now. I am not saying it does not hurt or sting a little . But I will be here to get over it. Right now I want to do everything I can for him it that means getting up one more time to see if he needs anything so be it. I took him for better or worse and I would like to keep him.
I do what I think is right so IF the day comes I will not have to question did I do the right thing? Or I should have. That is what love is isn't it?

bsn
Posts: 2
Joined: Aug 2010

Its a lot to figure out...I think they have to be angry somewhat at us for not being the sick one, for not understanding 100./. what they are going through. Some wise people have said "its never enough" and I think that sums it up. My husband is on his 52nd month of a 12 month survival prognosis (grade 3/4 bifrontal brain tumor)...no matter what I do (take on more home burden, find clinical trials, maintain an update website...) its never enough because, the cancer is still there. Please take care of yourself, no one else is going to..wish I'd figured that out sooner!

oceanshore
Posts: 1
Joined: Mar 2013

Hello there,

I have a fiance who is currently undergoing cancer treatment and i sometimes feel like he is someone else. He says that the chemotherapy makes him apathetic and uninterested. He was already diagnosed when we started dating and i thought about it for a long time and decided that i wanted to go ahead and be with him and that i would do everything in my power to put him first and be there for him no matter what, but lately i have found myself wondering what i got myself into, i cant believe i just acknowledged that out loud. Ever since we started dating i have put him first, i fly to him every 2-3 weeks since we have a long distance relationship, I shaved my head when he lost his, in a nutshell i will do anything and everything to make him feel loved and supported including moving to his city which i am in the process of doing, but despite all i do, i get worse treatment from him than i did as his friend. I feel an unmentioned sense of anger from him. Recently he had a speaking engagement to encourage young people in the church and talk about what life with cancer is like, and i could not believe how he talked about me, telling them how tired he gets of talking to me because of his treatment. This is one of the most hurtful things in life, when you care about someone so much and put him first and treat him better than you do your own family (including a father who is also currently battling cancer) only to have him put you first only in criticism. We are supposed to get married in September, and I have found myself thinking that this was a mistake, can anyone help me understand if this is normal with cancer treatments? I dont feel angry at him or his cancer, just extremely sad that this is how he sees me and i think that it will probably get worse after marriage if the cancer is not gone.....what should i do? I have told him that i wish i could take it on for him, because sometimes i feel like that would be easier than being on the other side....

Noellesmom
Posts: 1276
Joined: Aug 2010

To be the one with cancer.  Not that I would trade places with my husband for the specific reason of it being an "easier" ride but to at least give him a break from daily dwelling with the knowledge that the beast can come back, if it ever really left.

OS, I'm sorry you are going through this.  I think you are right to question whether you should get married in September.  I don't think cancer really changes a patient - I think the person they are gets amplified and it becomes more apparent because of this.  My husband did not become an angel: some of the issues we were dealing with as a couple may have gotten pushed aside when he was diagnosed (but not far aside - they popped up frequently) but they were still there and had to be dealt with at some point. 

Will your boyfriend's personality change by September?  Probably not.

Will you learn to accept by September those things which are already painful and difficult?  I sincerely hope not.

Did your boyfriend badly state his weariness of only having you with whom to converse?  Yes, he did.

Should he have said that he knows his loyal girlfriend must be exhausted from listening to him talk and that is grateful she is always there for him?  Yes, he should have.

I'm sorry about your father - that's got to be very hard for you.

Lifting you up in prayers for grace and common sense, Ocean.  Don't beat  yourself up for thinking about yourself and a chance for a life with someone with whom you share more values and ideals.  You aren't thinking about breaking up with a cancer patient: you are thinking about ending a relationship that does not, perhaps, have the best chances for a compatible future.

Women can easily convince themselves that caregiving is love: it is not.  Love is so much more.  Caregiving may be a component, but it is only that - one facet of a complex emotion.

Caregiving can stand alone: love cannot.  Don't confuse the two.

 

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

I agree with what Noellesmom says. I would add that this is a time to get to know each other better. My husband and I had been married for 36 years when he was first dx. Yet in the six years he was fighting his losing battle with cancer, we grew closer. I have often heard that the way people handle stressful time is a good indication of who they are. I think it is also true that tough times can either pull you apart or bring you closer together. We grew closer. It sounds like you may be pulling apart. You need to ask yourself if this is an indication of what might happen if you faced other stressful times in marriage. Also, you need to communicate with each other. Ask him what he meant when he said he gets tired of talking to you. Was he really talking about you specifically, or did he just mean he gets tired of talking? I know there were times when my husband was so fatigued after chemo that he just wanted to be left alone. That wasn't about me. It was about him. Are you maybe taking this too personally? Either way, you need to talk about your relationship and how his words made you feel. If you truly feel that this will get worse after marriage, don't get married until and unless you no longer feel that way. No marriage escapes difficult times whether it be cancer, other illnesses, children, or many other possibilities. Just follow up testing and the knowledge that the cancer might come back will need to be dealt with together in a marriage. Things won't magically change once you say your vows. You might consider couples counseling. If he won't go, go yourself to help you decide what is best for you. Maybe friendship is the answer. Fay

 

Tishfish
Posts: 3
Joined: Mar 2013

My best friend was diagnosed almost 3 years ago with squamous cell carcinoma of the spine. She has had 4 surgeries (most recently the removal of her T6 bone) as well as radiation with each surgery and several rounds of chemo last summer.  We just found ouhater cancer is back and she will be starting a clinical trial on Thursday for a new way of administering chemo. 

My boyfriend was diagnosed with carcinoid cancer just over a year ago. He had radiation and chemo and finished up last July. Then, two months aghe the cancer returned. He just finished radiation and has scans to get ready for starting chemo tomorrow. 

 

I'm exhausted. 

 

I had a severe allergic reaction that landed me in the ER Wednesday night (which is when I also found about about my friends cancer being back) and I just haven't felt right since then. I've been crying almost constantly and I don't have any motivation to do anything. Last night I snapped at my boyfriend about something small and now it's all spiraled out of control. I just want him to take care of me right now.  I have been taking care of him for a year and right now I just need him to tell me that I'm going to be okay. Instead he's pulling away and acting like it's too much to even come see me for a few minutes. Somehow my emotional pain is nothing compared to his stress of having a PET scan tomorrow. 

 

I feel like a jerk when I act like this, but I can't pretend it doesn't bother me anymore. I was very upset about all of this and I told him over and over that I wanted this to go away and for everyone to be healthy. I was crying and not acting like my normal strong, cheery self. Yet he makes no effort to return my calls, come see me or comfort me.  It was my other friend who showed up unannounced, forced me to get dressed and brought me to dinner. Even though she's going through the same thing, she was able to see my distress and help fix it. 

 

Is this one of those "men are from Mars" things? Also, my friend mentioned that when she was on Prednisode it caused her to feel like she was on an emotional roller coaster. I'm taking them from the allergies...could that be possible for me too?

Noellesmom
Posts: 1276
Joined: Aug 2010

Could be that you found out your friend's cancer is back, that you had an allergic reaction and don't feel well, that your boyfriend isn't being the most compassionate caregiver - gee, I wonder why you are feeling out of sorts, Tish?

Take a deep breath, get a little space for yourself to process all of what is going on, allow for the prednisone and the miraculous havoc it can wreak on your body - you are only human, you know, no matter how often you are called upon to shelve your emotions and help take care of others.

Give yourself time to get your balance back and acknowledge that in the middle of crises, there will be times that are worse than others.

Just breathe.

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

Tish, you might also want to think about joining a caregivers' support group, or talking with an oncology social worker who is associated with the hospital. You have every right to feel exhausted, and upset, and neglected, and at your wits end. That's a big deal for many caregivers; you're not alone in that. Think about ways like this of de-presssurizing, and remember that each of us reacts to this kind of stress differently. It's an emotional ride, with lots of ups and downs. When you have the chance to depressurize a little, you'll remember how strong you are, and how strong you'll continue to be. Most importantly, take care of yourself every day, even for just a few minutes doing something that reminds you of the little joys in life. You WILL make it through.

Debbie 

LindaK.
Posts: 301
Joined: Apr 2013

I have just read every post in this thread and feel renewed - thank you all for sharing your stories.  My husband was just diagnosed in December, 2012, so we have been in this cancer world a short time.  I work full time and he is unemployed.  I have used every minute of my time off to tend to him, which I don't mind, but do sometimes feel not appreciated.  He is pushing other family members away with his nasty remarks so I am left alone with him most of the time.  He complains about not feeling well enough to do some of his favorite things during his chemo weeks, and then when I go to great lengths to arrange an outing the week off, he wants to go home after an hour.  I feel I just can't win.  He makes passive aggressive remarks about me not getting groceries or cleaning, but then complains when I stop at the grocery store on my way home from work or want to take a nap since I've been sick for 3 weeks now.  I know I am the only one thinking about me right now and have to take time for myself, which is sometimes very difficult.  After reading what so many of you have gone through, I know my experiences are nothing new.  I was trying to give him a glass of water one night and I thought he was going to throw it at me he was so upset about it.  When you think about it, it is so ridiculous, but I'm hoping the old man I love will be back after his treatment is over.  He's being kind of selfish and babyish, but I realized I've helped create some of that.  Our son in law is fighting stage IV lung, bone and brain cancer and is really struggling.  My husband doesn't realize he really shouldn't be complaining as compared to our 41 year old son in law.

Thank you all for your suggestions on dealing with our angry, sometimes nasty spouses.  I plan to be in it to win it, whatever it takes.

talia406
Posts: 1
Joined: May 2013

I got home friday night after leaving my boyfriend of 10 months the morning before he rang the bell after 30 treatments and surgery for a squamous cell tumor on the base of his tongue.  Yesterday I found Debbie Cornwell on the web (Things I Wish I'd known) and she guided me to this site.  Below is what I wrote to her yesterday.  And today I still feel horrible.  Should I have left, should I have stayed, is he ok, will he get better, will he realize what I did for him? When can i reach out to him, should I wait?  Will he want to find the awesome relationship we had when we got the diagnosis?  I am beyond sad.  I have read the notes above.  I look forward to the connections, advice, and support.  

 

"I am looking for a picture on the web of a person hanging on to the back of a sled flying down a steep mountain and found your site. As a caregiver for the past 8 weeks through tongue cancer with my boyfriend this is the image that would define caregiver. The cancer patient has a diagnosis, a plan, progress reports, nap time, sleep time, eat time, it's a full day. There are no plans for the caregiver. We are just hanging on to each bump, trying to keep the sled on the snow, out of the trees, lean left, lean right just hoping that soon it slows down, the sun comes out, and at the bottom you can hug each other and say WHOA. After six weeks of neck radiation, pain, fear, depression, and drugs, drugs and more drugs, I had to leave him the night before he rang the bell. I feel so horrible. He had been on the phone with a virtual connection who coul " make me feel good...you make me tea". After a long phone call he came to the room at the cancer dorm and with his fentanyl oxycodone drug voice told me he hated me more than anyone he ever hated before, couldn't stand to look at me, and would get the police to come if I would not leave. It was the drugs. Without the drugs he understood what was happening. I am a nurse. I know the need for drugs. I got to know too well the spikes in mood with his drugs. When we went to the dr visits they would say "double the dose"...they never said "have you been out walking?"...."what other kinds of pain relief might work for you?" "Let's connect you with a counselor you can talk to" "yes, the 24 year old social worker might not have quite enough life experiences for you...let's find another option" I understand why a cancer patient would seek an outlet on the internet. Ok, maybe he's bottom line bad guy. I don't know. But he wasn't before cancer. We had already planned to take care of each other if we got sick. One month later he has cancer. I left the morning before he rang the bell. The night before we had the almost police scene. I stayed that night. Fifteen times he reassuerd the dorm overseer that he wanted me to leave.  The 16th time he changed his mind.  I stayed the night. I left early the next morning I did not see him ring the bell. We were 19 hours from home. I began my journey home to heal. I feel horrible about this. My pain, although I'm sure palls in comparison to his today, is great. Things I wish I'd know? One person can not be a caregiver 24/7 without breaks 19 hours from home. Someone should have told me that was not allowed. Also, the doctors deal with the patient for a short period of time in their office. Never once did a doctor or nurse ask me how it was going for me. The mood spikes were to be expected, ok, yes, double the dose. Maybe they already knew I was a fool for having taken this on. I have no regrets. I am not angry. I am just so sad because I am not there now. I will give time a chance to heal. But yes, there are many things I wish I'd know. Thanks. Because I am hurting so bad."

LindaK.
Posts: 301
Joined: Apr 2013

Talia, I am so sorry to hear about your cancer journey with your boyfriend.  I don't know how you stayed for even 10 months.  Maybe some day he will realize what he's done and what you did for him, maybe not.  I am married for 28 years to my husband, stage 2 colon cancer and so far I am in for the long haul.  I don't think anyone would think bad of you for leaving at this point in his treatment.  You have to take care of yourself, no one else will.  People may occasionally ask how I am, but 99% of their attention is on my husband.  Sometimes the doctors don't even look at me when I'm asking a question, which really irritates me.

You need to heal after what you've been through.  I hope you get the guidance and support you deserve.  I have downloaded the free sample of the book you referenced to see if I want to buy it. 

Thank you for sharing your details here.  I have found very generous and unfortunately, experienced people who have dealt with cancer a long time on this board.

Good luck and take care of yourself.

SadinSeattle
Posts: 2
Joined: May 2013

Hello, I am new to this board. Reading some of what other people have written has made me feel like I'm not so alone.

My husband is suffering with 4th stage melanoma. We found out last November that it had spread to his hip bone, chest, back, liver and lung. I've been with him 6 1/2 years and we've been married for 3 1/2 years. He was diagnosed in the first year we dated because I made him get a facial mole checked . It was 10 cc which did not bode well. Since then he's had radical neck and jaw surgery, radiations, lymph node biopsies, and extensive chemotherapy. At one time, three years ago they put him on 4 kinds at once and it was horrible. I have stood by his side, tried to create good memories and experiences and fought the good fight with him.

Which brings us to March. He could no longer get his leg over the tub here at our home and since his parents live 1/2 hour away and have a walk in shower, he went there for what was supposed to be a couple days. He shifted in a chair and his femur bone fractured in 3 places. I Spent every day at the hospital, and stayed overnite twice. Because we live at the top of 14 steep stairs, (a duplex) it was decided he would go to his parents home. They started Hospice and since then he has had large tumors popping up all over. He is on steroids, OxyContin, oxycodone and morphine.

I had called him before one of my dozens of trips back and forth and when I went to hang up the phone, I could hear him talking. I thought he was trying to tell me something more I could bring him, but he hadn't hung up the phone, and i heard him and certain family members bad mouthing me. I was devastated! I called to say i wasnt coming since my whole body was quaking from the shock of what id heard, and he screamed horrible untrue things at me, told me that I never have to go there again and to F off.

I was a mess. I cried for a few days and got a hold of the social worker from hospice. I left a message on my husbands phone that I felt awful, my feelings were hurt, but I knew he was in pain and on Meds and he said things I was sure he didn't mean. I assured him I love him very much. When the social worker called me she said he had shut off his phone to everyone and he needs a break for a while. It's been over a week and no word, phone call or email. I feel I'm losing my mind. Im not perfect, but I've been kind, loving,generous, true and loyal and he talked to me like I was a horrible person.

I am bereft. I don't have much family, only two Aunts in their late 80's, but do have some close friends with whom I've discussed this with. They are gobsmacked that he is treating me like this; it isn't like the kind man I was with for 7 years.

If anyone could offer me advice, or refer me to books or a therapist who would be good for this type of situation in the Seattle area I would so appreciate it. Thank-you.  I am sadinseattle.

 

 

 

LindaK.
Posts: 301
Joined: Apr 2013

So sorry you are going through this also.  I would suggest you drive to see him this weekend (if you can) and ask for some private time with him only.  Even if other people will not leave, you need to have what will probably be the hardest coversation of your life wtih him.  You know deep down it is the drugs talking, he is not himself.  I would also suggest going to your local hospice center or calling your contact there and get some more help and advice for YOU.  Maybe someone there can go to see him with you.  If not, ask one of your friends to go with you, just for morale support and some company in the car.  It will be tough, but you can't just sit and wait for him to call, he may not be able at this point.

I hope you find some peace with all of this.  Keep in touch, I have found many helpful people on this board.  You can, too.

SadinSeattle
Posts: 2
Joined: May 2013

Thank you so much for your kind and caring words. I think the spirits of people on here while undergoing hardship is proof of the resiliency of human nature and ability to maintain a steadfast love for another even in the face of venomous anger. God bless all.

LindaK.
Posts: 301
Joined: Apr 2013

Did you get a chance to see him or talk to him?  I hope you were able to ease your mind a little.

VichHung
Posts: 2
Joined: May 2013

Hi everyone,

I am really glad to find this page and read your stories because they make me feel I am not alone. I don't know who else to go to right now and I am feeling really guilty. My boyfriend was diagnosed with Hodgekin's lymphoma in Janurary and is currently undergoing chemotherapy. He does not tolerate the chemo very well because he is extremely afraid of needles and ivs. Last night we got into a fight, one thing lead to another and I vented my stress onto him. He took it the wrong way and thinks I can't handle the pressure. Now he is pushing me away and telling me not to come to chemo with him this wednesday. I don't know what to do. I've tried to explain to him that I am not complaining about taking care of him or anything and it's normal for me to feel stressed out because this also affects me.I know that he is going through alot with being diagnosed with cancer, chemo, side effects, loss of control, changes in body image, and everything else when he is only 22 but I don't think it's fair that he does not take the time to understand my feelings. 

From the day we went to the ER in mid-december till the day he had his biopsy done, i was there by his side 24/7 at the hospital. From janurary to april, i was in school so I couldn't go to chemo with him and i felt awful so I would sleep over on the weekends and spend whatever free time I have with him - take him out to dessert, movies, shopping so he would have some normalcy in his life. Now that I'm done school, i would sleep over the night before his chemo, go to chemo with him and stay with him until his side effects ease up. When his dad sends me messages about him not doing so well, I would go over right away and sleep there for the night to make sure everything is ok. I would research ways to help ease his side effects and think of things to say to him to motivate him to eat and exercise. He on the other hand, is not doing very much to help himself. He refuses to talk to about chemo at all because at the mention of it, he feels nervous. He refuses help from professionals like psycho-oncologists. Basically, he is not very active in this treatment. On top of this, I am stressed about finding a job since I am done school now, running out of money, and not spending much time with my family because I want to make sure he knows he is my priority.

Lately, he has been inconsiderate and less understanding. He hasnt put much effort into the relationship either. Am I a bad person to ask for a little meaningful act from him at a time like this? I feel like I can't talk to him anymore. I've been bottling up my feelings because I was afraid this would happen and now that it did, I have no clue what to do next. I am very worried for him this wednesday because he tends to vomit right before his chemo and during as well because he is so nervous. Any suggestions or advice?

 

 

LindaK.
Posts: 301
Joined: Apr 2013

I'm sorry you are going through all this.  You are both so young to have to deal with so many issues.  Only after 28 years of marriage am I able to deal with my husband's personality and now dealing with cancer.  Some of the steroids he was taking were making him crazy at times.  I know I have had to hold my tongue or walk away on many occasions.  I have been with my husband every step of the way, also, and the times I am away from him I am always worried about him.  He does not get steroids anymore, so thankfully the mood swings have gone away.  I have realized we have to focus on him and getting through chemo right now, day to day, hour by hour.  You have not had the life experiences we have so you may not know how to deal with so much stress.  My husband is pretty selfish and, believe me, EVERYthing is all about him right now.  I cannot even say I have a headache because he then compares it to his cancer so I just pretty much keep things to myself.  I know that's not so great, but his nasty comments have driven other family members away so it's mostly me around him all the time.  He doesn't work and I work full time (and thankfully have excellent health care) so I have that stress also.  I just try to keep him happy, even if it means just sitting watching some stupid TV show he likes.  I try to stay positive in all my words and actions.  I don't think he understands the stress on me and I don't think he ever will. 

I'm not sure what advice to give you.  I guess just show up with him to go to chemo with a smile on your face and love in your heart.  You can deal with the stress in your own way, but if you have explained and apologized for your words in your argument, I guess he will just have to come to terms with it.  Relationships are not always rainbows and butterflies.  Do this as long as you are able, if you need to start a new job, he will have to understand and I bet some other family members can help out.

Does he have a medi or power port?  This would ease the anxiety over needles.  There is virtually no pain when the numbing cream is used.  It also sounds like he could use some anti-anxiety meds - they can be taken starting the night before he goes for treatments.  I'm surprised the oncology center hasn't recommended this if they see him so nervous and getting sick.  Dehydration is not good during chemo.  You or his parents may need to speak to them separately.  They may also be able to connect him to some other people in his same situation.  Don't be afraid to ask questions, but make sure you do it in a way he won't feel threatened or nervous.  Good luck...

VichHung
Posts: 2
Joined: May 2013

Thank you Linda for your reply and I took your advice. I showed up on Wednesday with him to chemo. That night, he thanked me for going with him and apologized for the unkind words he said. Needles are not the only thing he is afraid of - any foreign objects in his body are a big no no so the ports are not an option. He does take Ativan for anxiety but does not seem to help him. The doctor recommended for him to speak to a psycho-oncologist which he refused a couple times. I've recently managed to convince him to try at least once, if he thinks it is not helping with his anxiety then he can stop. A few sessions into his chemotherapy, I also suggested the idea of talking to others who are in the same situation but he is very stubborn and not very active in the treatment. I'm not exactly sure what is bothering him so much - the night before he would be laughing with me, and when the morning of chemo comes, his mood completely changes. He is so serious and gives off this unapproachable vibe. He does not try to make small talks with anyone at the hospital unless necessary.

LindaK.
Posts: 301
Joined: Apr 2013

Baby steps, even the tiniest support can help.  It sounds like he is appreciating you again, maybe it took a little "time out" for him to do that.  My husband is not as active as I seem to be in his treatment.  Besides him getting all surgeries, hospitalizations, etc. he does not want to talk to others, does not even like seeing other people getting chemo.  If he won't take the Ativan, maybe you can!  I had to get something to help me just for a few days while he was hospitalized the first time when we didn't know what it was and his surgery kept getting delayed.  It helped me short term.  My husband's mood starts to change 2-3 days before his treatment.  He only has 3 to go so we are close.  He found out this weekend someone in a very similar situation to his did not get chemo (they were also stage II) and 6 months later have colon cancer mets in the lungs.  Now chemo is needed for that person to save their life, where it is being given to my husband to reduce the chances of it returning.

He gets so negative with me and then when I'm in no mood, he can't understand why.  He can act like an a.h. and then expect me to be happy and my usual pleasing self to him.  Yesterday, I had to leave for an hour or so because he ticked me off and when I explained it to him, he acted like he didn't know what I was talking about.  It's maddening, but then I just have to keep reminding myself what he is going through.

Good luck and keep in touch!

whisper2
Posts: 2
Joined: Aug 2013

Hi, i'm new.  ny husband has been in treatment for past 10 months for cancer. Almost finished and hoping for time together. They said he had a good shot ata cure, but just found out about metastasis. I am not well myself with chronic condition, but I am only in 50's, so trying to get things together for visits, etc. I don't want pity, but I see pretty stone cold, and that's the only way I can start to regroup is to acknowledge what I see. It's been too upsetting reading all the way through some of your posts last night, Could not handle that.  I have started to regroup by telling people what they can do, and taking the lead. And now I really expect to be ignored etc. If I don't expect, I won't feel so indignant by response that I think would be different if places were switched. I am looking into more profrssional means of support, so thank you all for posting these, this has been helpful. 

 

Diane m
Posts: 5
Joined: Sep 2013

whenMy when my husband was diagnosed they did an ore tommy and he had twe rear a back brace because the cancer fractured his spine.He was mean and hateful towards me and I came close to giving up.I was told it was the pain that was talking and to try to understand.Well I have no family support so I was by myself.Once he was out of the backbrace and his stitches healed he was back to himself.Im glad I stuck it out he still has his moments when he is in pain but we have been together26 yrs. I can't just throw in the towel.So I guess what I'm trying to say is hang in there it's not you he's mad at its the disease and the pain making him/her lash out.My husband tells me all the time he's sorry for how he acts,I tell him it's ok I understand.

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