struggling

Rob6894
Rob6894 Member Posts: 1
I am writing this as a therapy of sorts. I am struggling secretly as my wife family and friends do not know the pain I truly am feeling. My wife age 38 was diagnosed at the beginning of February with squamous cell carcinoma (never smoked a day in her life). In that instant our lives changed over night. The treatment for this cancer is extremely brutal and my wife has endured so much and her battle continues. I wish every day I could trade places and take this cancer away from her. I have taken a leave from work and throughout her treatment I have been by her side, I have been to every treatment, every doctors appointment, since her diagnosis there is not a moment that I have not been by her side. One of the hardest most unexpected things for me as caregiver besides seeing the awful side affects of the treatments, is the personality change my wife has had. She treats me very poorly, to be honest I expected her to be angrey and I even expected and want her to use me as a punching bag when she needs it. However everyday she looks at me like she hates me, has a nasty comment to say or the worst is accusing me of caring more about myself then her (this could not be further from the truth). She has isolated herself from me, and our 6 year old son.  While I have extremely supportive family and friends around me, I feel very alone and lonely. I sit writing this with tears in my eyes because I truly do not know what else I can do to be there for her. I love my wife, I know my wife loves me and our son very much and that is what I hold onto. There is no real close to this post or question I have. I am just writing because I needed somewhere to turn and express my struggle. To all those that may read this stay strong and have faith, have hope.  



Comments

  • sherylcv13
    sherylcv13 Member Posts: 23
      I understand some of it. 

    Cry  I understand some of it.  It's a tough thing to go through and sometimes we think it would be easier to be on the other side of the bed.....

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    Wondering why we see this so much

    Rob, as you read through these posts you will see you are not alone. So often cancer patients seem to have this reaction.

    I always wonder if the cancer has metastasized to the brain, if the pain is greater than they are admitting or if depression is a factor. What was the patient's personality before treatment? 

    A gentleman named Catholic posts on here and his experience is similar. Look for his posts.

  • Catholic
    Catholic Member Posts: 86
    Everything you said is normal

    Everything you said is normal.  Trust me when I say I have personally been down this road and continue down this road today.  Living with an angry spouse is a struggle.

    Its hard for me to give good advice because I dont always live by the advice I give.  If you go to Church (which I do), the Church says to look to the future and not to the past.  The Church says to forgive. And its easy to forgive. I can forgive and Im sure you can forgive your wife's anger and nasty comments as well.  But its hard to live with someone who you know is going to exhibit really bad behavior in the future and your just waiting for the bad behavior to reappear.  And no matter what you do, you know the bad behavior is coming and you wait and endure.

    Here is what I learned on this journey:

    1. Get a good night sleep, exercise and eat healthy.   You, the caregiver, are running a marathon. My wife gets angry all the time. If I stay rested and fit, I can ignore the anger.  I honestly feel like Im training for a marathon every day.

    2. Take breaks.  When you take your child to school in the morning, take yourself out for breakfast or lunch or anything.  You earned a break.  Take every opportunity you can to clear your head out and relax and find peace. I joined a gym and bring my kids and its great.  I take my kids to the park and let them play and run around and I just sit there and relax (it also gets me out of the house and away from my wife).

    3. Vent whenever you can to others.  Or at least talk to others.  Talking is good.  You can vent on this site as much as you like.  If you have "extremely supportive" family and friends, then thats great.  Talk to them and hopefully they can spend time with your wife.

    I have struggled with my wife for years.  Before every going to a clinic, she was angry and isolated herself.  She should have went to a clinic 5 years before she actually did. When she went through chemotherapy, she lived in an apartment and there was peace and it lasted 1-year.  Its been a year since chemotherapy and she lives with me and its awful.  I know what your going through.  I run this marathon every as well.

  • rsp
    rsp Member Posts: 103 Member
    edited April 2017 #5
    I feel ya!

    My husband is 17 weeks post radiation for SSC, too.  I have found him to be getting really mean at times, and I don't know what to do.  It makes me so upset and angry.  I think he needs to have a psych. evaluation, and maybe your wife does, too.  He is doing and saying things that are so "not normal" for him... I am going to let the drs. know at the next appointment what is going on, and I am hoping they  have some suggestions.  I think depression has a lot to do with it.  I will let you know if I get any answers.

    I understand how you are feeling.  We, as caregivers, give so much of ourselves to try and help, and when we are treated like dirt in return, it hurts... bad...

    Hoping to get some answers from the dr. this week.

    Hang in there!

  • CeeJay6
    CeeJay6 Member Posts: 3
    This is not normal!

    My boyfriend is so darnned sick, and the doctors say this is normal. I just want to scream "This is not normal"!! He flew through treatment like a champ, then as each week went by he got weaker and sicker and sicker, now, we are 9 weeks post 7 weeks chemo/rad and he is dieing right before my eyes, he has been in bed for 3 weeks, his labs they say are ok, I call all of his many doctors, and am so flipping frustrated that I hate all doctors. My gawd, I am screaming something is just so not right, he has throat cancer, can't eat, swallow, his throat rope is so bad he spits a smelly phlem that I can't even sleep in the same bed. I wonder if the smell is of him dieing. His breathing is so labored, it sounds asthmatic, and I lay awake at night listening to him breathe. He had PET a few days ago, the results were that they didn't see cancer, but the damage in his throat was so severe they couldn't rule it out, scope result was the same report, today he drank the chalk and they said "how are you even swollowing?' He goes in for biopsy in a.m. and they are preparing us for tracheotomy.  My family is gently preparing me to prepare for the worst. It sounds like the radiation is killing him, seems to be the gift that keeps on giving..and it is so not pretty, I try so hard to stay positive, he is snotty and rude and tonight I blurted out that my quality of life was as bad as his, and feel just horrible that even came out of my mouth. How do I ever not pop off and remember this is just not about me, that he needs me to be strong and this very well could be his end

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    CeeJay6 said:

    This is not normal!

    My boyfriend is so darnned sick, and the doctors say this is normal. I just want to scream "This is not normal"!! He flew through treatment like a champ, then as each week went by he got weaker and sicker and sicker, now, we are 9 weeks post 7 weeks chemo/rad and he is dieing right before my eyes, he has been in bed for 3 weeks, his labs they say are ok, I call all of his many doctors, and am so flipping frustrated that I hate all doctors. My gawd, I am screaming something is just so not right, he has throat cancer, can't eat, swallow, his throat rope is so bad he spits a smelly phlem that I can't even sleep in the same bed. I wonder if the smell is of him dieing. His breathing is so labored, it sounds asthmatic, and I lay awake at night listening to him breathe. He had PET a few days ago, the results were that they didn't see cancer, but the damage in his throat was so severe they couldn't rule it out, scope result was the same report, today he drank the chalk and they said "how are you even swollowing?' He goes in for biopsy in a.m. and they are preparing us for tracheotomy.  My family is gently preparing me to prepare for the worst. It sounds like the radiation is killing him, seems to be the gift that keeps on giving..and it is so not pretty, I try so hard to stay positive, he is snotty and rude and tonight I blurted out that my quality of life was as bad as his, and feel just horrible that even came out of my mouth. How do I ever not pop off and remember this is just not about me, that he needs me to be strong and this very well could be his end

    Husband was stAge 4a seven years ago

    And is still with me.

    We should email, ceejay.

  • Catholic
    Catholic Member Posts: 86

    Husband was stAge 4a seven years ago

    And is still with me.

    We should email, ceejay.

    7 years at stage 4!!!

    7 years at stage 4!!!

  • rsp
    rsp Member Posts: 103 Member
    Breath of death

    CeeJay,

    I felt the same way as you do about a month ago.  My husband finished his treatment for SCC on December 23rd.  He is STILL not eating, and was so weak and "out of it" after his treatment I thought I was going to lose him. He lost 82 pounds and had no energy at all.  Does your boyfriend have a feeding tube?  My husband did not have one.

     My husband also had a terrible smell coming from him.  We found out it was his oral hygene.  He had thrush, and because he felt so terrible, was not taking care of his mouth the way he should have.  He thought he was, but it just wasn't enough. He was told to swish with Nystatin 3 times a day as well as swish with salt water.  The smell quickly disipated.  Worth a try?

    I still thought he was not going to be with us much longer, and I begged the dr's to do something.  To me, it seemed like once the treatment was over, the doctors didn't seem to care anymore.  I sent countless emails and they finally saw him.  The doc said my husband's throat wasn't healing like others.  He said it was rare (lucky us...). The doc wouldn't even do a PET because with the condition of my husband's throat, he said the PET would light up like a Christmas tree... 

    I found myself thinking the worst and began to mentally prepare myself for what I thought was going to be the end of my husband's life.  He threw up with every drink... he couldn't keep anything down.

    Fast forward a few weeks... Out of the blue, things began to slowly change.  The dr. prescribed TRENTAL to help heal my husband's throat, and the nutritionist suggested he drink JUVEN twice a day for wound healing (you can get it at Giant), but we found it much cheaper on Ebay.  Keep in mind this is almost 4 months post treatment!

    He still has a long way to go... I am still driving him everywhere since he is on heavy pain meds, but I do see a glimmer of hope.

    If your boyfriend had a clear PET scan, that is a positive thing.  

    Where is he receiving treatment?

    I will keep your boyfriend, and you, in my prayers. 

    Just wanted you to know I felt the same way you do and then, slowly but surely, miracles started to happen.  Hang in there.

    If you have any questions, I will try to answer the best I can.  I am also a great listener.

  • sshhaarrii
    sshhaarrii Member Posts: 38 Member
    Dear Caregivers.

    Dear Caregivers.

    I would like to personally thank you for devoting and sacrificing your ALL to us patients.

    I've experienced it. My heart and soul has been so overwhelmed by the graciousness of my caregiver husbund, I am forever humbled. 

     

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    Catholic said:

    7 years at stage 4!!!

    7 years at stage 4!!!

    Cancer free for six

    With one recurrence.

    However, his current health is very poor, unfortunately.

  • AnnaLeigh
    AnnaLeigh Member Posts: 187 Member
    edited April 2017 #12
    Is the anger really fear and grief?

    Rob,

    My heart goes out to you and your entire family during this struggle. A cancer diagnosis often results in two very different reactions - it either brings everyone closer together or can cause an emotional withdrawal and distance. Your wife may be very scared and may be experiencing anticipatory grief for the loss of her prior way of life.  Both of these can be expressed as anger. Unfortunately it is expressed as anger towards the ones who love her the most. Cancer patients will also distance themselves in order to not feel the pain of losing the ones they love the most. As if disconnecting their love relationships will allow them to feel numb and they can avoid facing the awful emotions that are brewing and stirring in their hearts.

    Most cancer treatment centers have Social Workers and/or Chaplains who will be able to refer the family to counseling services.  I do not personally know anybody or anyone who was prepared in life to deal with what cancer can bring to their lives and family counseling can help open communication and open hearts to the truth that anger is mostly fear of the unknown. It can also allow this experience to be shared among the family.  Everyone in the family is afraid and fearful; everyone is a little angry; and everyone is grieving for the lost normalcy of the way life used to be. Perhaps letting your wife know she is not alone in her fear and grief.

    Wishes for love and peace to you,

    AnnaLeigh 

     

  • phuckcancer
    phuckcancer Member Posts: 63 Member
    I am so sorry you are going

    I am so sorry you are going through this. It's hard enough for us to understand (try to) what we are going through or they are going through. It's just difficult period :(

  • R431G
    R431G Member Posts: 1

    I was searching the net for an answer and found this post - Not quite the answer I was looking for but its good to know that this is "normal."  Not sure if Normal is the word - but I'll take it. 

    I thought I was being punished, with the path that was laid infront of me but I know its my wife that's having to go through cancer.  Its a daily strugle.  Last one to bed, first one out...  A year and half now since my wife's last chemo.  Everyday I wake up, I feel like a robot. Usual stuff, I just do what I have always done.  Clean the house, make meals for everyone, take care of the kids, work, and all else.  Struggle to pay the medical cost, cost of living, work 18 hour days - and keeping the kids happy.   I can't get my wife to exercise or eat healthy - she just continues to take pills, and sit there.

    Haven't shed a tear in years, but as I'm typing this - its trying, I just don't think it works anymore.

    I'm tired and alone.  The word alone has more meaning to me now.

    I just keep telling myself, keep going and stay afloat until the kids are in college or at least if one of them turns 18.

    I love my wife, and will continue to do anything for her.

    She says she loves me - but I feel alone.

    I don't really have a question. I just want to get this off my chest.

    Off to make lunch for everyone I go.

  • ssuand1
    ssuand1 Member Posts: 9
    This is hard

    My husband is stage 4.  But he is really difficult in the car..leans over checks speeds,yells about lanes Im a nervous wreck by the time we get to appts.  But at home hes fine 95% of the time.  i try to e paient but not always easy.  I founEd the isolation is hardest for me.  Going to store is my only time out of the house now. All family is overseas so IM the only caregiver.  Each caregiver is dealing with issues and we just have to vent even if just on here. lol

    sue

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    Special

    Kind of alone when you are with someone but still alone.

    Hugs.

  • Teach76
    Teach76 Member Posts: 354 Member
    Sharing

    No words of advice in this area - just read your post and adding prayer for your family.  Continue loving!

    KS

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    ssuand1 said:

    This is hard

    My husband is stage 4.  But he is really difficult in the car..leans over checks speeds,yells about lanes Im a nervous wreck by the time we get to appts.  But at home hes fine 95% of the time.  i try to e paient but not always easy.  I founEd the isolation is hardest for me.  Going to store is my only time out of the house now. All family is overseas so IM the only caregiver.  Each caregiver is dealing with issues and we just have to vent even if just on here. lol

    sue

    Think of it this way, Sue...

    If you had a 7 year old who was screaming, yelling, finding fault, leaning over you as you were driving, what would you do? You'd let the kiddo know, before you ever got the car in gear (or perhaps over dinner at home) that their behavior isn't helpful and that you find it distracting. Then you'd let them know how you expect them to act in the car in the future, ask for their much-appreciated cooperation, then negotiate how you'll correct any not-helpful behavior in the future (i.e. mention it... they say they will self-correct... you mention what you will do if they continue their not-helpful behavior...). 

    I never needed to do this with my spouse, but with my father?! Gracious!!! He used to rant at other drivers, yelling slurs and profanity in multiple languages. I fully expected a recipient of his ire would one day drag me out of my car at a stop light and beat me up (or worse) to teach me some manners. It was terrifying, and I totally get the nervous wreck thing even though it was coming in a different direction. 

    So, after Dad and I calmly (more or less) had our chat, the next time we were out driving he started in on another driver. My car didn't have A/C, so windows were open and even people on the sidewalk heard him and were looking our way. I reminded him of our chat and asked him to stop. That was step one. He continued. Step two? I pulled over to the curb, parked the car, and told him to Please Get Out. He didn't, so I walked around to his door, opened it, and repeated my request.  By the time he realized I was totally serious, I was at step four or five and almost using my playground voice, saying, "Get out of my car NOW. I will not have you yelling profanity and insults at others when you are riding in my car. You promised to be respectful of others but just now you're angry and disrespectful again." He was physically disabled, so I'm sure people thought I was an absolute horrible person (we had an audience of people in the fast food restaurant and also at the bus stop). If he'd gotten out of the car, I'd have made sure he had money for coffee and the bus (and probably would've just driven around the block). But he didn't get out, was remorseful, apologized, and amazingly when riding with me never again acted as though he'd been raised by coyotes - over twenty years of mostly pleasant rides together in the car. Who knew?

    I realize it's different when dealing with one's spouse. Unless they disown you, parents are pretty much stuck with you. Spouses, not so much. There are always friends, the American Cancer Society's volunteer drivers, and healthcare shuttles that get people to and from appointments and treatments. There is no reason for you to have to put up with disrespect, not to mention distracted driving is dangerous. 

    Hang in there!

  • Pink Delphinium
    Pink Delphinium Member Posts: 6
    edited July 2017 #19
    AnnaLeigh said:

    Is the anger really fear and grief?

    Rob,

    My heart goes out to you and your entire family during this struggle. A cancer diagnosis often results in two very different reactions - it either brings everyone closer together or can cause an emotional withdrawal and distance. Your wife may be very scared and may be experiencing anticipatory grief for the loss of her prior way of life.  Both of these can be expressed as anger. Unfortunately it is expressed as anger towards the ones who love her the most. Cancer patients will also distance themselves in order to not feel the pain of losing the ones they love the most. As if disconnecting their love relationships will allow them to feel numb and they can avoid facing the awful emotions that are brewing and stirring in their hearts.

    Most cancer treatment centers have Social Workers and/or Chaplains who will be able to refer the family to counseling services.  I do not personally know anybody or anyone who was prepared in life to deal with what cancer can bring to their lives and family counseling can help open communication and open hearts to the truth that anger is mostly fear of the unknown. It can also allow this experience to be shared among the family.  Everyone in the family is afraid and fearful; everyone is a little angry; and everyone is grieving for the lost normalcy of the way life used to be. Perhaps letting your wife know she is not alone in her fear and grief.

    Wishes for love and peace to you,

    AnnaLeigh 

     

    Thank you

    AnnaLeigh, what you have said has helped me.  God bless you.

  • Pink Delphinium
    Pink Delphinium Member Posts: 6
    ssuand1 said:

    This is hard

    My husband is stage 4.  But he is really difficult in the car..leans over checks speeds,yells about lanes Im a nervous wreck by the time we get to appts.  But at home hes fine 95% of the time.  i try to e paient but not always easy.  I founEd the isolation is hardest for me.  Going to store is my only time out of the house now. All family is overseas so IM the only caregiver.  Each caregiver is dealing with issues and we just have to vent even if just on here. lol

    sue

    Sounds like my life

    Sue, I'm sorry you are going through the same things I am.  I have no answers, but I feel a kinship with you. Let me know how you're doing.  We can compare notes.

    Cari

  • Option B
    Option B Member Posts: 8
    Today he started giving up.

    My husband was just diagnosed May 6th, Stage 4 prostate cancer now progressed to the bones, even the bone marrow.  He needs blood transfusions weekly.  Too far for chemo, only pallitative care at this point.  The hormone treatment is working, with his appetite back and his pain level very much decreased.... but today he started giving up.  His last text was "My life is gone".   And it is in a way.  

    He closed his small business immeadiately upon diagnosis since he was originally too sick to keep the doors open.  Being born with Spina Bifida, he has physically and emotionally struggled all his life and 5 years ago, a doctor's mistake during his 53rd surgery, a simple one, left him in an electric wheelchair.   And now a death sentence out of nowhere.  Cancer isn't even in his family.

    Today, he's sitting in a mess of a house (I'm now working non-stop to make up for the hours gone for treatments) watching judge shows and feeling very depressed.  The septic has backed up and can't get fixed til tomorrow.  And he's stuck in it all.  

    I've encouraged him and he admits himself, he needs a hobby or something to keep him interested in life.  Unfortunately, housework doesn't do it for him.  Doesn't for me either, but I'm not sitting at home...  I'd quit work in a heartbeat to make it all better for him if I could!  But there's only so much a 55 yo overweight diabetic woman with a bad back in a too-hot-in-the-Summer house who's working like crazy and driving him an hour each way for treatments two to three times a week can do!  

    No way I'm sleeping with this stress. On long treatment days, I'm racing 1 hour to drop him off, where I then drive back 1 hour to go to work for 6 hours then race 1 hour back to clinic to get there before 5 to then drive 1 hour back with a very depressed and bitchy man.  Yes.  That's 4 hours on the road, 6 at work at least one day a week.  And 1 day a week I have to take then entire day off so I'm working extra hours the other 3 to make up for all the missed hours because the cost of the trips alone are breaking us cuz he's on SSDI.

    OK.  I'm SOOOOO grateful for every second I get to snuggle in his arms.  I ignore the house so I can stay next to him.  I cry several times a day as I try to believe he's really dying and won't be here!!!!  But every day after work I land facedown on the bed and can't move for an hour until I have to force myself to get up and at least fix dinner.

    Time for myself?   Bah humbug. (is that how you spell it?)  This is it and I'm stealing this time from work.  I'm calling it my new mental health break, since I've had to break my regular appointments with a counselor for 2 months in a row.  

    So today he says his life is gone.  Yep.  Both our lives are being sucked dry by the Big C.  And we aren't even facing chemo or radiation.  Just overwhelming exhaustion on my part, extreme anemia on his.  If only we could win the lottery and afford to just spend time together making memories.   I hate that with so little time left, we have so little time for tiny moments of joy!!!!   Sigh.  Suggestions?