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  • He isn't doing his part

    I really can't take this any more. My husband isn't doing his part and is leaving it all up to me. He has been doing this our entire marriage and all this has finally made me break. He doesn't care, doesn't ask questions, doesn't read any of the information given by doctors, and I can't keep doing this for him. At what point is he supposed to take over his own care, his own body? He doesn't remind me to take my asthma medication. He doesn't remind me to take my blood pressure medication. Doesn't remind me to have a pap test yearly. I do this on my own because it is my body and my responsibilty.I told him that he needs to be proactive with all this and not leave it up to me. He told me that he is preparing his body for treatment and can't get more proactive than that. He is supposed to have radiation....what is is preparing? He has basically given this to me and wants me to fix it. I can't. I am tired and right now I am so full of hate and anger that I don't care what happens next. It is just too much for me. I hate cancer and I hate him for not taking control of this... not making this "our" problem but my problem and something that I need to do if I want to make sure he gets better. I am tired of everyone telling me that this is just how a man is. It is really hurting me inside and I just can't deal with this any more.

  • #2
    smdemom:
    Many things happen along the road we travel and sometimes it takes difficulty to sharpen our awareness. My only suggestion is to stay in charge of this situation and then when your husband is better work to resolve the issues between you. If you can't work things out you can walk away with the knowledge that in your relationship you were the giver and not the taker.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

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    • #3
      smdemom - -

      I agree with dadmo's comments. Get through this, then work on your problems with your husband - sounds like you have always done everything, so that is the way he expects it.

      But based on my own experience, I would bet that he is a bit of a mess inside - dealing with his loss and fear, and doesn't know how to talk with you about it - because he has never had to talk with anyone about something like this before. He needsto understand that this is not just his problem, it affects you too. He needs you right now, but you need him too.

      As far as preparing his body for the radiation treatments goes, I went through radiation, and I don't know how you prepare your body for it. You just make the arrangements and show up every day and get through it. I hope he is not putting it off and using this as an excuse.
      Right I/O 4/17/06, Seminoma Stage Ib
      RT (15 days) completed 6/1/06
      All clear as of 5/8/09

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      • #4
        "At what point is he supposed to take over his own care, his own body?"

        Hmmmmm, how about NOW? If he's always been like that I suspect you've enabled him to do so. Stop doing for him things he can and should do himself. You're his wife, not his mother. Hand him the list of phone numbers he needs (Docs, rad. facility, pharmacy) any information you've put together, and step back. Radiation does not need him to "prepare his body". He's chosen the treatment path, most likey has his dates set for the RT, and then it's follow ups. He will go for his zaps, and probably feel nauseated afterwards. He either pukes after every treatment or tells the doc and gets a prescription. Let him handle it. He needs to take some ownership of his life so YOU can take care of YOU for a change. This is hard on you too. Tough love, smdemom, tough love.
        Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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        • #5
          You are right Karen, as you have stated, I have always taken care of EVERYTHING and allowed him to do this. I went through a big melt down last month when he handed it all to me… I had to let him know that I can’t do this for him. He promised to take a stand and do what is needed and right for us as a family and for him…BUT….

          We had an appointment with the “specialist” for yesterday. My husband had nothing written down to ask and told me that he would ask questions based on what the doctor said. Of course I had 40 questions typed out, spaced accordingly for answers to be written. Well, when we got there the doctor was confused…he thought that we were there for a second opinion BEFORE the orchiectomy. Turns out the urologist here that referred us to Vandy did so with a surgeon, not a rad-onc. The specialist at Vandy kept saying that we needed a rad-onc, not him…we thought he was a rad-onc. We saw a radiation oncologist here in our town…but by no means an expert (although I am beginning to think that he THINKS that he is…the whole cancer department only treats 3 patients a year they said.) The path reports show “Spermatic cord with seminoma within small vessels”. The surgical oncologist thinks that radiation should be done in the pare aortic (sp?) area AND the nodes in the groin area. Well, this didn’t sit well with the rad-onc here and he doesn’t want to do it that way. He says it isn’t the “norm”. Of course my husband who isn’t looking up any info informed me that the radiation will kill any cancer cells in his body with just the pare aortic nodes being nuked. He is so NOT informed that he is not making the right decisions. My husband has decided to go with the rad-onc here and forget having that second opinion with a specialist. Why in the world would he do that? I have tried and tried to explain the importance of getting this done right and the consequences of not getting it done right. He told me that he just wants to get it over with. So…I made the appointment with the correct specialist at Vandy for next week and gave him the information. What and where he goes from there is his choice. I have handed him the information and walked away from it.

          I am so scared of him making the wrong choice that I feel guilty. But I can truly say that I have done all I can do and have now gone off the deep end and can’t do any more. It is his.

          I will say that I got a chuckle over his comment (after the anger that he would even use it for an excuse for laziness) about preparing his body for radiation. I imagined him sitting in a zen garden meditating and eating all the cancer fighting fruits, veggies and nuts that we organically grow in our imaginary organic garden. For some reason…in that image: he was shaved bald and was wearing a monks gown.
          Thanks for listening to the rant….
          ~Michelle

          Comment


          • #6
            Michelle:
            All you can do is present the facts. As hard as it may be to watch your husband has every right to make decisions for himself. There is only so much you can do. He knows the options and the consequences of his actions now it up to him. But, are you really going to be able to not help?
            Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

            Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

            Comment


            • #7
              smdemom - -

              You go ahead and rant.

              It sure sounds like laziness rather than him not being able to deal with it all. All you can do is give him the information, if he does not want to use it, you can't really force him to. Ultimately it is his decision. He may want to take the easy quick way out rather than have to think and agonize about the right decision - but it is his decision. Unfortunately, you have to deal with the aftermath.

              Luckily, seminoma is very treatable. He may already be cured with the I/O alone. Radiation is to lower the odds of recurrence. Because your husband is making the decisions, he really needs to be informed, which he is not. There are good reasons why over the years they have changed from the general carpet-bombing radiation to the dogleg, and more recently to the paraaortic only. A second opinion would really be helpful - but you can't force him to do it - all the information is available on the web - you've given it to him, it is up to him.

              It's terrible that you have to deal with this, but rest in knowing that it is his decision, and no matter what he does, it is likely he will be OK.
              Right I/O 4/17/06, Seminoma Stage Ib
              RT (15 days) completed 6/1/06
              All clear as of 5/8/09

              Comment


              • #8
                Robert,

                This whole appointment fiasco was on the part of our local urologist. The thing that bothered me about Dr. Cookson is that he kept saying that we need to see a rad-onco but never referred us to one. He also didn’t seem like he wanted to talk to me. His nurse called me yesterday and told me that he thought we were there to talk about a second opinion for surgery for the RPLND….not pre-orchiectomy like I thought. But that just tells me that he wasn’t prepared for us. And he never stopped to say, “I think that you were referred to the WRONG doctor”. It was a strange appointment and I was wrong for not saying “whoa…something isn’t right”, but I do believe Dr. Cookson should have spoke up. I do know that he was trying to get to a surgery and that they moved our appointment up an hour because of that. He seemed to be in a hurry. I don’t like that….especially after a 2-hour drive in and back home again... in all that rain we had Monday.

                My husband has a new urologist here because there is something just not right about the one we have seen. He appears to have a God Complex and doesn’t like the research/questions I have been asking. He was offended when we told him we wanted to see someone at Vanderbilt (which is why I believe he INTENTIONALLY set up the appointment with Dr. Cookson) and kept saying that Centennial would be his pick…he has another buddy there that he would trust even more then the experts at Vandy because they served in the military together. He called me yesterday to say that he heard that Dr. Cookson “dropped the ball on this one” (his favorite expression to use) I told him that Dr. Cookson was NOT the correct oncologist to be seeing at this point and he argued with me that he was…after Dr. Cookson’s nurse called and told me to tell the urologist here that he was the wrong dr. to send my husband to! The urologist called my husbands regular m.d. right before Christmas to complain about me…not realizing that she is a FAMILY doctor and has been my doctor for YEARS. He said that I was “over-reacting” and a little “too upset” when hearing the word “cancer”. That didn’t go over well with me…or my doctor and she let him have it…then told me we needed to get a new urologist.

                Anyway, we will be seeing Dr. Malcolm at Vanderbilt on the 24th. Do you know anything about him? I read his profile on the Vandy site. All I want to know is whether or not what the rad-onco here will be doing is the right thing or not. Cookeville Regional is NOT well known for the leaps and bounds they make in medicine! My husband saw the rad-onco (here) yesterday and he is adamant about NOT doing the groin area. Is it common to do the groin area when cancer cells are found in the small vessels of the cord?

                Thanks for listening and answering!

                ~Michelle

                Comment


                • #9
                  Robert,

                  Thanks again for everything.

                  I am sure that Dr. Cookson is a wonderful doctor and I don't want to discourage anyone from using him...it was just all screwed up by the doctor on this end of it all.

                  We did get a 2nd path report with Vanderbilt that shows it is pure seminoma. The 2nd opinion from a radiation oncologist EXPERT that can confirm what they should be doing here is what we are looking for now. I am concerned that the rad-onco here is so adamant about NOT radiating the groin area. Is it a norm to do so when there was small vessel invasion in the cord? I thought that I read it is normal to do that. Dr. Cookson recomended it, but then stated that we would need to confirm that with a rad-onco specialist. When mentioning this to the rad-onco here, he said that Dr. Cookson shouldn't be saying anything since he is not a rad-onco. That makes me wonder what he will say if Dr. Malcolm says to radiate the groin area also.

                  The oncologist here has really ticked me off! If it didn't seem like I was rambling, I would go through everything that he has said and done. He seems to be a quack and wants my husband to keep coming in. We have seen this guy no less than 10 times since his surgery. He keeps finding reasons he needs my husband to come in. I am not sure if he wants total control or wants to keep billing us. Strange man...

                  Thank you for everything.

                  ~Michelle

                  Comment


                  • #10
                    smdemom - -

                    Glad you are getting help with this. Reading the posts reminded me of the frustration and confusion I suffered through when trying to get the referrals and trying to figure out who is my doctor for what, etc. I have learned that sometimes we have to ask questions several times, and question answers several times, so we really understand. Follow-up questions and clarifying just want your understanding is, help a lot, but I agree that sometimes we probably seem like we are being difficult or maybe somewhat slow to the doctors.

                    You are doing a great job for your husband.
                    Right I/O 4/17/06, Seminoma Stage Ib
                    RT (15 days) completed 6/1/06
                    All clear as of 5/8/09

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