Is it normal...

j4mie
j4mie Member Posts: 218
in Head and Neck Cancer #1

Hi all. Just have to ask this question...Is it normal for some cancer patients to take absolutely no interest in their treatment, and what is to be expected during and after treatment? As I have mentioned before, I am the caregiver of Pat who is about ready to start radiation treatments next week. Mask fitting takes place today (we had an unanticipated dental setback). He will listen when I tell him what I have learned, but has absolutely no interest in taking the reins and doing a bit of research himself. I told him if he wanted, I could give him my password to this site and we can be "Jamie and Pat" instead of just "Jamie" he said "no thanks"...I can only hope that he will at least do as I say as far as putting the cream on, keeping up on very strict dental hygeine, L-glutamine, Mugard, and all of the other things I have learned from everyone so kind to help us...feeling a bit frustrated just now.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    normal

    Jamie and Pat,

    It is one thing to go on cruise control and just follow what to do by rote.  It is another thing to not lift a finger to help one’s self.

    What we (H&N) provide are “real life” tips, tricks and advice which have proven results.  My three biggies are Lorazapam, magic mouth wash and silver sulfadiazine cream, let alone salt and soda, and drinking water.

    With information I learned and exploited I went from a terrifying nightmare to a manageable bad dream.

    Also, you might consider this to be depression on his part.  It sometimes takes a bit to come to grips with this mess.

    Just trying to help,

    Matt

  • hwt
    hwt Member Posts: 2,328 Member
    #3
    CivilMatt said:

    normal

    Jamie and Pat,

    It is one thing to go on cruise control and just follow what to do by rote.  It is another thing to not lift a finger to help one’s self.

    What we (H&N) provide are “real life” tips, tricks and advice which have proven results.  My three biggies are Lorazapam, magic mouth wash and silver sulfadiazine cream, let alone salt and soda, and drinking water.

    With information I learned and exploited I went from a terrifying nightmare to a manageable bad dream.

    Also, you might consider this to be depression on his part.  It sometimes takes a bit to come to grips with this mess.

    Just trying to help,

    Matt

    Each is different

    My approach was to "take it as it comes and deal with it".  My sister was my primary caregiver, she did her homework and lead the way for me when I needed it. It worked for me. We each cope in our own way. Mostly put myself in God's hands and trusted in his plan for me. Sometimes the mind has a way of protecting a person from places they need not go.

    Candi 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    I honestly don't know what is "normal"

    Some folks get into researching everything....almost to the point of knowing not only what needs to be done to get through treatment, but would like to direct the actual medical side of things.  Others are more passive, wanting only to know how to make treatment as doable as possible.  Pat sounds like he's WAY passive, which makes me wonder if he's super depressed (to the point of not caring).  Maybe make a deal with him....as long as he doesn't want to partake in finding out what he needs to get through this treatment as easily as he can, that you will do that part.  However, if he entrusts his care to you, that he has to do the basics of what you tell him.  I know down the road that nutrition and hydration are going to be problems and he isn't going to want to do an Ensure or a smoothie.....so you might have to compromise on some things....but that's all down the road.

    One skill that is invaluable during treatment is only doing one day at a time....sometimes one hour at a time.  Do what you have to do for this day, and let tomorrow take care of itself, it will be here soon enough.  That's not just for the patient, but for you too. 

    p

  • cureitall66
    cureitall66 Member Posts: 913
    #5
    Normal.....

    Jamie,

    Welcome! I, too, was a caregiver to a loved one. My loved one's personality is "If I don't have to think about it, it doesn't exist". Guess that's ok to a certain point with things. But, I was the researcher and passed the information onto him. I think he was afraid of what he might read and didn't want to make it any worse on himself then he already was with dealing this whole thing. However, my loved one never ignored his care for himself. He was really good at remembering what he needed to do. If something wasn't working or he wondered if anyone else experienced the same side effects, he would ask me to check here on the forum with my "peeps"... :).

    I don't find it unusual for your loved one to keep a distance with this. Some people just don't want anymore information then what the doctors tell them. And the internet can have some pretty scary things. I would find it unusual if he doesn't participate well in his treatment. Again, everyone is different in how they handle things. Communication is the key to helping our loved ones through this.

    ~C 

  • j4mie
    j4mie Member Posts: 218
    #6
    After my post...

    Pat and I had to go to get his mask fitted, SO...I suggested we leave early to go to GNC to get a few more things I wanted to make sure we have. I think having him go with me, may have helped get him interested a bit. It was nice to have him there to pick out his flavor (protien powder) instead of me making the choice for him and hoping he likes it :) As far as depression goes...hmmm, hadn't really considered it, but could be possible with all of this craziness. As it so happens, he has always been a very healthy guy, and I am the one, in fact, who has had a health issue here and there throughout our marriage. I do think he may be having some trouble coming to terms with not being the caregiver this time. Anyway, I will take the advice of one day at a time, and sometimes one hour at a time. I think that will apply to both of us at some point or another. I will also keep a close eye on him to make sure that he is not dealing with depression issues. Thanks again everyone.

  • robswife87
    robswife87 Member Posts: 209
    #7
    j4mie said:

    After my post...

    Pat and I had to go to get his mask fitted, SO...I suggested we leave early to go to GNC to get a few more things I wanted to make sure we have. I think having him go with me, may have helped get him interested a bit. It was nice to have him there to pick out his flavor (protien powder) instead of me making the choice for him and hoping he likes it :) As far as depression goes...hmmm, hadn't really considered it, but could be possible with all of this craziness. As it so happens, he has always been a very healthy guy, and I am the one, in fact, who has had a health issue here and there throughout our marriage. I do think he may be having some trouble coming to terms with not being the caregiver this time. Anyway, I will take the advice of one day at a time, and sometimes one hour at a time. I think that will apply to both of us at some point or another. I will also keep a close eye on him to make sure that he is not dealing with depression issues. Thanks again everyone.

    Rob had no interest

    in knowing what whas going to happen. He stated he will take it one day at a time and go with the flow. 

    I joined here and never looked at another site in terms of prognosis and help.

    I took care of everything so he could just focus on getting well. He did take care of his own meds and did rads himself. Chemo day I always took the day off to go. He never went to that day alone. My mom took him once and our daughter took him once.

    I don't think it is that unusual for men especially to not read too much and put themselves in the doctors hands.

    Sandy

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
    varying degrees of denial

    Are all within normal limits for people experiencing life-threatening illlness.  We all have different reaction s, from obsessive research, to complete disinterest.  It's all probabaly ok, provided you don't absorb so much of the obligation that it overwhelms you.  Me, I was one of those who could "do it myself."  I made all my own food, did all my own shopping, drove myself, the whole nine yards.  I suppose it was my way of feeling I still had some control over something.  Not to take anything away from my wife.  She wanted to help, I just couldn't let her.  Hope this insight helps a bit.

     

    Pat

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #9
    Normal

    Normal is whatever one chooses to be their typical or standard.

    I didn't do any research on the web but did focus on kicking some cancer **** according to instructions from my team. My wife took the reigns on a limited basis and stepped in when I needed a push mostly when the fear kicked in and took over my personal drive to push forward. You will be the coach but will need to know the personality that your coaching.

    I hope this makes sense.        Now go kick some cancer ****..................

          Jeff

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #10
    Interest

    I can honestly say that my husband did no research whatsoever, but he did follow the doctors' instructions to a "T".  I did all the research and would tell him about what I found.  Sometimes as caregiver I get very discouraged because it seems like he isn't interested and at times like this I just let go at him, not that it does any good.  But he is the first to tell anyone that without me he wouldn't be here today. 

    And yes men get depressed but like men, they normally won't admit it.  The doctor did try to give him something but he wouldn't take it.  I know now he is very depressed because he is terminal but still he doesn't want to take anything.  I tell him, we are all terminal and no one is promised today or tomorrow.

    Hopefully your husband will follow the doctors' instructions like mine it because that really took a burden off of me because just driving the 30 miles daily to and from for radiation took a lot out of me.

    Wishing you the best -- Sharon

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    Can't Answer...

    As I am far from "normal"..., I am "Abi-Normal"...

     

    For me I was very pro-active, learning as much as I could, sifting out the bull crap from the golden nuggets... and as others, wanted to kick azz, and do whatever it took to survive and keep on kickin..

    John

  • Roar
    Roar Member Posts: 269 Member
    #12
    I didn't know of this site when I went through my ordeal

    I do know this - I wanted to fight it- and I would do anything to get better. I remember being scared, especially before the surgery as we didn't know what we would find and what I would look like when I woke up. I rolled the dice and everything worked out. Only 1 lymph node was involved and it was well encapsulated. When the doctors told me stage 4 because of the size of the lymph node and they were going to treat aggressively I didn't quite understand what that meant. I thought a little chemo( 3 citsplatin ) and I think 33 treatments" after about 28 treatments I was told they are going to map out another area and concentrate on the other lymph nodes in the area, so all told it was 40 rads. I put my life in the hands of the professionals and asked God for help. I am not as smart as a lot of people on this site and really have no interest in all the technical terms except NED( no evidence of disease ) . All I care about is seeing my oncologist and ENT GOING FOR MY PET SCANS and praying they are NED. I WISH I KNEW ABOUT THE MUGARD BECAUSE AFTER 10 months my taste buds are still not what they were. I would imagine the worst is running through his mind as was mine. Being diagnosed with this disease is a sledge hammer over the head - for me I wanted to get better but couldn't help but wonder would I survive. I am sure as treatment progresses he will take more and more of an interest as he gets positive feed back from everyone around- for me the chemo days were the worst- even though the hospital will hydrate you the day before and day of treatment it is important to drink as muck water as can be tolerated to wash it out of the system The days following chemo- Take one day at a time and before you know it - it will be over and on the road to recovery- just remember it is a slow process measured in weeks and months not days.

  • Bart T
    Bart T Member Posts: 62 Member
    #13
    Everyone's version of normal

    Everyone's version of normal is different. As to me, once I decided upon doctors, I had little interest in knowing the ins and outs of the procedures. I looked at it the same way I do when I get on a plane. I trust the mechanics that serviced it, and I trust the pilots who fly it.

    As to what to expect with regard to side effects and problems, my doctor went over them with me, and explained that everyone reacts differently, and I felt that if I concerned myself all of the possible complications I would be overwhelmed with fear. I only did two things in preparation; I ate a lot, and I attended a hypnosis session to relieve my anxiety over the mask, as I didn’t want to have to be sedated for treatment. Other than that I took it one day at a time.

     

    Good luck to you both. You’ll need each other, and I’m sure you’ll find your own normal. 

     

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