Tips to keep a loved one positive?

nifty
nifty Member Posts: 12
edited March 2014 in Head and Neck Cancer #1
My father has tongue cancer that has gone in to his lymph nodes, stage 4. He is HPV positive, which makes his prognosis pretty good. This type of cancer can be cured! He is 75 and retired early, many years ago. He has COPD and has let that sort of damper his activity and he was probably depressed even before this diagnosis. He is on anti-depressants. He is doing 1 time a week cisplatin in conjunction with 39 radiation treatments. Today was day 15 ... he had chemo the first week. Then not the second due to low kidney function - then again last Thursday. He is absolutely petrified of chemo (even though he does not say it out loud). Evey side-effect a Dr. mentions - he gets the next day. He is looking for excuses to quit, eats hardly nothing no matter what we say or try. He is MEAN to my mother and in general has one foot in the grave already.

It is very frustrating as we know that this is treatable with a good chance he will be cancer free with the treatment plan and a good attitude. What can we do to help him?! Right now we have just backed off and let him know we will do what he wants - but that he has to tell us what he needs etc. We pretty clearly understands the ramifications of not doing this - which is death via cancer (and not a pretty one). He emailed his Dr. today and told him he did not want to do chemo anymore due to the 'side effects' - which for him at this point are still minimal (funny taste in mouth and tired), however he seems to think they are the worst that can happen. The PA told him that if he was going to quit one thing, it should be the radiation - that the chemo was more important. Obviously that had no effect as he still wants to either not do it or get the lowest dose possible (which I already think he is on). Any tips on how to handle this or what to say to him to keep him going is appreciated. I should mention we have all tried to get him to see a counselor and he will not.

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    first
    Establish communication with his oncologists and let them know what you think is going on. They can't help if they don't know.

    He is from an era where cancer meant death sooner rather than later and he may not truly comprehend that survival - and even thriving - post-cancer is more the norm now than the ghastly deaths he may remember.

    I know this is so hard.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #3
    Frustration.
    I can only imagine your frustration. I believe I would not be able to deal with your father as kindly as you and your family have been dealing with him. He has exactly what I had. He has what Michael Douglas had. Base-of-tongue, HPV-positive and mets to lymph nodes on both sides of the neck. He has just about the single MOST curable cancer out there - 95% chance of a cure for a non-smoker non-drinker (me) and a greater than 75% chance of a cure for a lifelong drinker-smoker (Mike). Cisplatin chemo concurrent with radiation is the gold standard to treat this stuff. It really really sucks, but it is SO doable. So very many people face incurable cancers. I cannot imagine having this great a chance of a complete cure, and turning your back on it. to die from cancer is a truly horrible way to go. I believe, if it is base of tongue, it just might choke you to death. I am a small, timid, wussy whiney baby about a great many things. And, I am female. I got through this. Side effects and all. I believe I'd want to smack your father, rather than giving him space.

    My thoughts are with you. Here's hoping for a better outcome.

    Deb
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Hi Nifty
    Welcome to CSN glad you are here but sorry to hear about your dads Cancer.

    Just to let you know your Dad sounds a lot like me when I first started treatment, I too was very hardheaded and ran just about everyone out of my house. I did not knot know what was going on or why people were staying away from me, even my wife who is my Rock, my best friend, and caretaker I was giving hell too. You dad may be having the same problems, for me it just took time to get over and passed the treatment.

    Just keep letting him know you care and that you love him, in the end I believe that is what got through to me and woke me up
  • Hal61
    Hal61 Member Posts: 655
    #5
    Tough spot
    Hi Nifty, sorry to hear of your dad's and your family's problem. What bothers me most is your telling us he already understands the ramifications of not following through. Like Deb said, he needs a shake to make sure he really understands, that he needs to continue treatment. If he doesn't want treatment you can't make him take it. When the pain gets great enough, he'll likely want treatment--being human; but it may be too late. Unfortunately, this what he needs to understand.

    After a year of reading posts, to me meanness in our case seems to be a common symptom of denial, and sometimes certainly pain. I don't think your dad really understands yet what he's inviting. Treatment side effects will get tougher, but the effects of untreated cancer will get tougher yet. I have an ex father-in-law who's a bit older than your dad. He was a medic in the South Pacific in WWII. I can't imagine any way in hell how anyone could do that job. He's never talked about it to me or anyone I know of. It was always hard for me to even think about giving him advice. Just do your best to make sure he knows what he's in for, and continue your support.

    best, Hal
  • ratface
    ratface Member Posts: 1,337 Member
    #6
    Hal61 said:

    Tough spot
    Hi Nifty, sorry to hear of your dad's and your family's problem. What bothers me most is your telling us he already understands the ramifications of not following through. Like Deb said, he needs a shake to make sure he really understands, that he needs to continue treatment. If he doesn't want treatment you can't make him take it. When the pain gets great enough, he'll likely want treatment--being human; but it may be too late. Unfortunately, this what he needs to understand.

    After a year of reading posts, to me meanness in our case seems to be a common symptom of denial, and sometimes certainly pain. I don't think your dad really understands yet what he's inviting. Treatment side effects will get tougher, but the effects of untreated cancer will get tougher yet. I have an ex father-in-law who's a bit older than your dad. He was a medic in the South Pacific in WWII. I can't imagine any way in hell how anyone could do that job. He's never talked about it to me or anyone I know of. It was always hard for me to even think about giving him advice. Just do your best to make sure he knows what he's in for, and continue your support.

    best, Hal

    Find someone who survived
    You will soon start hearing about friends and neighbors who have had thios cancer. It is much more common than you think. What helped me was to go and talk to a friend of my brother who was a ten year survivor. Really helped me emotionally to deal with it.
  • adventurebob
    adventurebob Member Posts: 691
    #7
    Watch or not
    Sorry to read about the spot you and your family are in. With a cancer this curable though; there is absolutely no reason for you to be in this spot. Chemo sucks! Radiation sucks! Death from cancer sucks way, way, way worse. If your father is aware that he will die if he doesn't work this then the real question is are you and your family willing to watch him die a preventable death? This has the feel of an addiction type system, so maybe an addiction type intervention would be helpful. You know; everyone write a letter to your dad and read it together letting him know that he is free to choose treatment or not, but nobody will support him in not choosing it. Very important for everyone to be on the same page though. And then be willing to follow through.

    I also want to add; it's normal to be afraid of chemo and radiation. It would be nice if your father could be assisted in working through his fears and guided to a healthy choice. So maybe the intervention would be designed to get him to see a therapist, not necessarily do treatment. Perhaps you can talk to the therapist on staff at the treatment center about how to do this.

    Best of luck to you. Hopefully everything works out soon and your father gets the treatment that will save his life.

    Bob
  • Pam M
    Pam M Member Posts: 2,196
    #8
    Seven Weeks
    Seven Weeks - the most common treatment time is seven weeks. Your dad has three done. Remind him that that means that there are four more weeks of treatments, then three weeks of not fun times after treatments. Still seven weeks. It's not fun - it hurts - it's scary. But it's seven weeks - he should start to feel better in six or seven weeks from now.

    If he skips treatment, the cancer will progress until he dies. Until he dies. It won't get bored and go away. This will probably not take seven weeks. It will probably take somewhat longer. It will not be fun - it will hurt - it will be scary. And it's longer than seven weeks - he wil feel progressively worse as time goes by. So there will be more "side effects" that will last longer and never get better until your entire family is in agony.

    Please ask him to consider carefully where he wants to be 10 weeks from today - recovering, or getting worse. Please ask him if he really wants to put your family through the horrible pain of knowing that everything could have been so much better if only he'd continued treatment. No matter which path he chooses, there will be "side effects". Ask him if he wants the side effects to get better or not. Good luck.

    For the record - I just finished my treatment for Stage four base of tongue cancer, spread to two lymph nodes. I'm younger and healthier than your father (bless his heart, COPD is hard), and understand that chemo side effects are probably harder on him than they were on me. I still would not hesitate to play the guilt card, and ask him to get with the program, and put up with treatment now, to spare your family grief. I did nine weeks of "big" induction chemo followed by seven weeks of chemo radiation. Last week, I had surgery to remove several lymph nodes from my neck. I hope he does well.
  • nifty
    nifty Member Posts: 12
    #9
    D Lewis said:

    Frustration.
    I can only imagine your frustration. I believe I would not be able to deal with your father as kindly as you and your family have been dealing with him. He has exactly what I had. He has what Michael Douglas had. Base-of-tongue, HPV-positive and mets to lymph nodes on both sides of the neck. He has just about the single MOST curable cancer out there - 95% chance of a cure for a non-smoker non-drinker (me) and a greater than 75% chance of a cure for a lifelong drinker-smoker (Mike). Cisplatin chemo concurrent with radiation is the gold standard to treat this stuff. It really really sucks, but it is SO doable. So very many people face incurable cancers. I cannot imagine having this great a chance of a complete cure, and turning your back on it. to die from cancer is a truly horrible way to go. I believe, if it is base of tongue, it just might choke you to death. I am a small, timid, wussy whiney baby about a great many things. And, I am female. I got through this. Side effects and all. I believe I'd want to smack your father, rather than giving him space.

    My thoughts are with you. Here's hoping for a better outcome.

    Deb

    Yes!
    Hi Deb - I do want to smack him. Every time we put food in front of him and he pushes it around his plate like a child and takes one bite .. makes faces etc. I want to throttle him. It takes all of my restraint not to do so. I think he feels if he complains the dr's will coddle him or back off - not the case. They have many patients that want to live and are fighting tooth and nail, they do not have time for his **** footing!
  • nifty
    nifty Member Posts: 12
    #10
    Pam M said:

    Seven Weeks
    Seven Weeks - the most common treatment time is seven weeks. Your dad has three done. Remind him that that means that there are four more weeks of treatments, then three weeks of not fun times after treatments. Still seven weeks. It's not fun - it hurts - it's scary. But it's seven weeks - he should start to feel better in six or seven weeks from now.

    If he skips treatment, the cancer will progress until he dies. Until he dies. It won't get bored and go away. This will probably not take seven weeks. It will probably take somewhat longer. It will not be fun - it will hurt - it will be scary. And it's longer than seven weeks - he wil feel progressively worse as time goes by. So there will be more "side effects" that will last longer and never get better until your entire family is in agony.

    Please ask him to consider carefully where he wants to be 10 weeks from today - recovering, or getting worse. Please ask him if he really wants to put your family through the horrible pain of knowing that everything could have been so much better if only he'd continued treatment. No matter which path he chooses, there will be "side effects". Ask him if he wants the side effects to get better or not. Good luck.

    For the record - I just finished my treatment for Stage four base of tongue cancer, spread to two lymph nodes. I'm younger and healthier than your father (bless his heart, COPD is hard), and understand that chemo side effects are probably harder on him than they were on me. I still would not hesitate to play the guilt card, and ask him to get with the program, and put up with treatment now, to spare your family grief. I did nine weeks of "big" induction chemo followed by seven weeks of chemo radiation. Last week, I had surgery to remove several lymph nodes from my neck. I hope he does well.

    Thanks
    Good advice and thoughts from all. I have thought times about just making the appointment with a councilor and making him go. I like the analogy you make Pam - about where he wants to be in 10 weeks. I'll try that line and see what we get. Stay tuned, I have tried tell him that people different cancers would be grateful to be in his spot - where there is a high chance of curability. So far that hasn't really resonated.
  • ekdennie
    ekdennie Member Posts: 238 Member
    #11
    your dad
    I don't know if you have any children, but if you do...ask your dad if he wants the children to remember him as a fighter...someone who did everything he can to beat his cancer or if he wants them to remember him as someone who gives up. get a copy of the people magazine article that has michael douglas in it...leave the copy by the toilet where you know he will need reading material. print up info for his type of tumor and how well it responds to radiation and chemo treatments...place those by his toilet as well. then say nothing. ask how he is, let him grump at you, but don't mention the articles. since he won't go see a counselor...it might help if you and your mom go see someone to help you learn how to deal with him.
    I had surgery and radiation. I was terrified of the radiation, but I was more terrified of the tumor coming back. I would rather have six weeks of treatment, months of side effects, and scans for life than miss one moment of my children's lives. that kept me motivated.
    if nothing else works, just leave him be. oh, and just to let you know...the one thing that still drives me crazy is when people who haven't had cancer tell me about people who have had it and how they handled things. I am handling my treatment and the side effects the best way I can, and everyone responds differently...it is hard to listen to so many people telling me about so and so who died of their cancer, or so and so who lost all of their hair...so I am lucky to only have lost a little...etc.
    giving your dad a journal is also a good way to get him to think about how he is feeling, without him having to see a counselor. tell him it is either the journal or you will take him to a counselor. it might work!
    wishing you the best of luck!

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