Checking In

Wow, Rayn, I am so very sorry that your husband is cruising on that river of DeNial! It is so hard and sad to watch someone we love do this to themselves. I am not sure if his doctors have told him the ultimate outcome if he diddles around a whole lot longer, but they sure need to. There wasn't a single doctor that we went to see that didn't say, "RC is your only choice". And, we are grateful for that since it allowed Jim to move forward with the surgery. He just wanted it out, all out if that gave him a better chance of survival.

Now, for what you can do. I simply am at a loss as to what to say but will try. You have to keep yourself mentally in good shape. I know that often the attention rightfully is on the patients but the caregivers suffer so much as I read your words of such helplessness. Know that we are all here to support you.

Over the course of the last 6+ months I have acted in tandem and on occasion alone as Jim's advocate when he wasn't able to or wanting to do something that I knew needed to be done. He got very stubborn when he had a bad infection with 103+ fever. I just told him two choices either I take him to the ER or I would call EMS. He decided for me to take him. But, that doesn't help you out.



I do hope your husband see the light soon as his life literally depends on it! Again, take care of yourself during all this stress.

Hi Rayn,

What a little web you have to deal with. I don’t know whose worse, the doctor or your husband. My wife has been my biggest advocate on this journey and all my doctors respected that and made sure she was in the loop. It sounds like your holding back on your feelings for the doctor… I have talked to a few people in the past that had this cancer who were stubborn and waited to long or were under treated because it was more convenient. It tore their families apart. The end game becomes obvious after a certain point messing around.

It is hard to be on the caregiver side as you don’t have to “wear” the stress of having the cancer. That’s no excuse though to make you crazy. My wife can be pretty blunt, and when things slowed down, she spoke her mind. Your husband should be happy you want it done with now and not drag out the misery.

To bad about the cooking. Once I took control of that the world changed. Is there anyone in his family you can talk to that might get through to him and push for another doctor? The VA seems scary with simple things, this cancer and VA hospital shouldn’t be in the same sentence. Also sounds like the doctors got patients mixed up from poor communication?

Don’t give up! Remember slow and steady. Something you might enjoy, my wife can be very blunt, the day before my surgery we went for a walk and got our mail. Two different funeral homes mailed info packets. My wife said she wanted them just in case I changed my mind in the morning and didn’t go through with the surgery. A couple of days later in the hospital I found them in a folder I had taken with us. I asked her why they were in there and she said if I didn’t go through with the surgery, I would have something to read living in a motel… maybe call and ask for info so when he checks the mail?

Keep checking in and venting. Give us the stress! Maybe if you stay in the background listening and taking notes, they will refer him out to a good doctor to get rid of you!

Bill

Dr. Aronson wouldn't even make eye contact with me at the appointment. It was like I wasn't even in the room.

In fact, I've started a journal today, where I'm documenting every appointment from here on out and I'm bringing the binder to the appointments with me. They don't want to talk to me, fine. I'll be writing. My husband wants me to keep my mouth shut? Good. I'll write.

To Aronson's credit, he wanted to do this Csytectomy a long time ago, but my husband chose not too. Now, we're up against a wall of "No Time".

At every turn I'm told to stay out of it. I'm just supposed to sit there and smile and act like everything's fine.

The first thing I have to do is to stop getting pissed off about all this. It's not doing me any good emotionally and mentally. I'm not going to be any good to my husband if I'm blown out and exhausted from having to fight him every time he wants to float down the River of DeNial.

My best weapons are education and information. If I have those two things in my pocket, I'll be stating facts. It will take the emotion out of the equation and I'll be able to deal with this a lot better.

Some people would rather die then be wrong or let someone who loves them support them. There's a difference between controlling and supporting someone. Some people can't or don't want to see the difference because they want to be right all the time; so much so that it costs them more then they could ever bargain for.

Rayn

So good to see you back on the forum, Pat. Hope you are doing much better! Yup, I agree with regard to "tough love" and believe me there's been some of that when needed for Jim. But, again, it was his decision to approach this as a team and it is just how it has worked well in our marriage all these years. I don't think either of us is a true control freak like Sara Anne wrote...well, maybe somewhat. But, overall, simply put..."it aint broke we aren't trying to fix it". So glad to see you back again, pat. Stay well we all need your input and info that is so very valuable. BTW, I am sure Jim also did research online during the days leading up to his final decision of what he wanted and needed to do for his BC.

Well Sara.Anne....good for you.
i personally would have loved for someone to help me with my research when i was first diagnosed as it was quite a daunting procedure. I didn't have non-invasive ..i had invasive ..and very little time to make decisions and hope to God they were the right ones. Thank you to Wendy Sheridan of Web/Cafe who did guide me in the right direction. And if i go off the deep end and don't seem to take into consideration the loss of power of the patient its because sometimes they need a little tough love.
i'm done.
pat

Thanks, Sara Ann, I appreciate your comments a lot. Jim and I decided as we have done most things in our marriage that his BC was a team effort. We figured most of the thins we addressed over the many years of marriage had worked out well with that approach. To relieve him of so many of the things that need to be done with BC I told him his job was to get through the surgery, get through the chemo and get well. He has done two of the three so far. I will help with all the stuff that needs to be done, insurance issues/ordering supplies/Rxs etc. It has worked well to this point. Jim has always had high pressure type jobs either as a manager or in the engineering fields so he is totally capable of doing any and all of what I do but if I am willing and able it relieves him of some of the stresses that he doesn't need to be dealing with right now Today, he is dealing with a HUGE diarrhea problem from his chemo on Thurs + Friday. So, that's enough for him today. I come from a 43 yr medical background as a mammographer/nuclear med technologist. So, it is second nature to me with finding info out. It's always different when it's one of your own, more so I suspect than if I were the one ill. Well, off track but thanks for the acknowledgment to wives and husbands. It's a real challenge for sure! Hard to watch your loved one suffering. But, short term suffering hopefully for long term reward.

Mike, thanks for the hat tip. You know what a basket case I was when I first came here. I was so upset I left for a few weeks to recoupe from the intial onslaught. But, did come back because I needed more information and this was the place I got it and still do! Thanks to all who have helped us so much!