I'm Just Ranting

[Flowergirlie]

My poor hubby has been so miserable. I am fully aware that he is seen as a 'difficult' person which I like to describe instead as passionate . He is special to our family of course but maybe not the MOST important patient in the cancer center even though we are partial . But, we are dealing with a new treatment team in the radiation area and hubby is having a lot of new and evolving problems in which I attempted to discuss and find resolutions to and was really horrified at how the conversation progressed with the nurse. I was telling her that I know where all of this is headed but the unbelievable amounts of pain my husband endures everyday is controllable to some degree with the right knowledge and prescriptions and the nurse showed no compassion whatsoever. We had decided that hubby was not going to continue treatment because it is not curative and his quality of life is far below poor and we are accepting that and that nurse was saying to the effect that she thought he should not give up and keep going with treatment because maybe he could stick around for a couple more years but he is MISERABLE and what is responsible? Should I selfishly desire for my husband to live so I do not have to deal with the unbearable concept of his death or should I lovingly comfort him as he goes through the remainder of his life and allow him to go knowing that we will be OK and he does not have to worry anymore? It makes me so angry that medical persons can not accept when someones wishes are to have quality over quantity.

I wish for him only peace and to grant his last wishes if possible, is that so wrong?

[lewellen9581]

I dont think you are being selfish at all. Ultimately, if he is able, it is his decision. You being the one person that loves him more than anyone else. should support him and stand-by him. There are far to many people who I know that pushed their relatives to fight as hard as they could until the very end, and then regretted it.

With Daddy I always told him to only do what he wanted to do, dont ever take a pill or a needle for me. He did get mad when I called the ONC one night he had a high fever, but felt fine. So after going to the ER at midnight to have his bloodcount done he told me that he didnt want to go , but he knew I would keep nagging until he did What can I say, I wanted the best for him!

Now, after he had the stroke, it was all on me. And I DECIDED that if he couldnt enjoy life, I didnt want him here. He hated hospitals, of course, who doesnt? They did offer to continue treatments, but at that point it was out of my hands and his quality of life was more important.

I am sorry the nurse was being a hag, I think some nurses need more training in compassion, apparently everyone isnt born with it. My Daddys onc nurse was very unfriendly and unhelpful to put it nicely.

I wish you well, and I am deeply sorry you are having to go through this with your DH.

[kamataca]

My first thought as I was reading your post was, "Is this nurse new?" Surely anyone who has spent any time in this world on cancer we know so well should know that every individual is unique, and each will have their own perspectives.

You are living this life with a man you know very well. Of course you two should be allowed to make all decisions without needing to explain yourselves to anyone.

You are both in my thoughts and prayers. I don't know where you pull your strength from when you really need it, but it is there. Take care of yourself as well, OK?

Kelly

[EastCoastLadi]

(((Melinda)))

A very hard decision, as you know, I know, first with the nurse, don't waste the time in your head thinking about what she thinks!, obviously she doesn't know what your husband has and is going thru.

Of course, what does he want to do, I know that with Carlton, before he went into the coma, wanted to continue chemotherapy, regardless of what it would do to the quality of his life, at that point it was his decision, and I and his dr. fully explained the pros and cons.

Try to get hold of the radiologist, and also remember, you can talk to his oncologist, I don't know anything about your husbands' drs. But my husband had the most incredible oncologist you ever want to meet and there were times when I wanted to talk with him, he would get right on the phone.

This is a very critical time in your life, don't worry about what others think of you. Please take care you know I'm here for you.

Grace

[TamHol]

There is nothing wrong with your husbands request ... sometimes the treatment is worse than the illness itself.

Just keep in mind there are ethic's in the medical feild that say "preserve and prevent". And don't forget they are all people too with families and loved ones. Personal opinion and faith are hard things to keep to yourself when having such a conversation. Unfortunate but true, bed side manner and unbias opinions are not the biggest concern when they graduate from nursing and medical school!

If you don't feel the request is being respected then remind them of their place. "This is about my husbands comfort level, this is what we've decided and this is what will be done." Smile and walk away!

Nothing said will be enough to get you threw the day easier ..... but limiting the amount of brow-beating outside of your own abilities, is very handy.

Good luck to you and your family, are the kids okay and a part of this decision? Personally, I think it's important, but yet not for everyone!

Tammy

[Bev'sSister]

I am so sorry that you even have to have this decision in your life. You seem to be so strong. Your husband is very fortunate to have you as his wife. I wish I could be there to hug you and help you get through this. I have followed your husband's timeline, because he was diagnosed at the same time my sister was. I will be praying for peace and strength for you and your family. Take care of yourself and please keep us posted.

Love,

Bobby

[Treebywater]

I'm so sorry that on top of dealing with these difficult decisions and new routes of dealing with this that you are encountering such uncompassionate dimwits. You DON'T need that. And I would mention her behavior to your doctor.

You guys made an excruciatingly hard decision, and you feel it's the right one. That's ALL they need to know.

For what it's worth--we support you, here.

[Don Wood]

I think you are on the right track and I'd ignore the nurse. First, they should control your husband's pain so he is comfortable. When we first went to the onc, the first thing he did was get the pain under control. That is why my wife could function through her 4 years.

Second, it is your husband's choice to make whether to continue treatment. You are not selfish to want him to be as comfortable as possible with whatever time there is. Hang in there. Don

[teriw]

I agree, definitely talk with both doctors. Being in pain is just awful, and if they can do something about it, why the heck not? Who isn't "difficult" when they're in pain, right?

Also, I've never dealt with this myself, but I have heard that people speak with social workers who work for the hospital. Perhaps they might intervene or help the communication.

The treatment is your hubby's decision. No one else knows what he's going through. However, I would imagine that a decision about further treatment would be very difficult to make if the pain is unbearable.

Thinking of you guys...

[mamasbabygirl]

I think it is the patient's decision to make and as long as you are honoring that, then you are doing the best you possibly can.

[Chanwit]

Your final words on this post mean the most for me and should be the guiding words for all of us. It's not an easy decision to make but the most peaceful once made. I can feel your confusion.

Interesting enough is that in our case it has always been the opposite situation. Doctors and Nurses always dropping the H word (Hospice) because it was incurable. Lisa was in serious condition and didn't tolerate the Chemo very well but we stayed on top of the complications and were very proactive. She made a 180 degree turn back from the Edge with the proper treatment and now the dotors and nurses list her as a Miracle and who would have thought it.

Reading your post it sounds like if the pain can be managed you both would have a big relief and right now. There are extreme measures for controlling pain. With pain out of the way, maybe what the radiation nurse said would be more understandable to keep trying to fight it back.

I wish for both of you to have peace and comfort in any decisions you make and to know that you are doing the right thing what ever decision you make.

Be good to each other.

Chanwit.

[missyk]

My first thought upon reading your post was (to the nurse) "If YOU felt like that YOU sure wouldn't want to keep going, either!!" I get a LOT snappy when I'm in pain (Like I'm a real angel when I'm not! )...as everyone else has said, pain control first and foremost. Who knows what his outlook will be about treatment if he's not hurting. It might change, it might not.

And no, you're not being selfish to want your husband comfortable and to honor his wishes about treatment. I AM sorry you guys are having to go through this, though. Best of luck with the new team and controlling the pain. I'm thinking of you guys and praying.

[ma's kid]

Flowergirlie,

NO, you are not being selfish..you are a wonderful, brave, loving wife.

The nurse was being an ignorant A$$.

Hugs and take care and know we are here.

I am just so sorry.

Libby

[Kirsty]

Flowergirlie - your post has made me so angry with that nurse that I have stopped lurking and signed on, just to send you encouragement and support. As everyone else has said, the priority must be to get your husband pain free. This should be possible, and I would keep on at the oncologist until it's done. Then you can all think clearly and decide what to do next. And yes, it is down to your husband, and you on his behalf if necessary, to make the decisions about whether to continue or not with treatment. Don't let insensitive nurses bully you into doubting yourself and your instincts.

[MEA]

I am so sorry you are dealing with this and hope there is a way to control the pain and keep him comfortable. You not selfish, you are a remarkable, loving wife who is doing her best. Keeping you and your family in my prayers.

Mary

[Sis]

Flowergirlie,

Have faith in yourself and the decisions you and your hubby make. Just continued to do what's best for your family. You know you've got a lot of friends on this post who are praying for you all. Please keep us posted. Ellie (Sis)

[Suzie Q]

I do think a note or call to the office manager is in order. What the nurse said to you was out of line and no less acceptable than if she had suggested the opposite! It is the nurse's obligation to be unbiased and supportive, and not add more emotional strain to an already stress-laden time.

Who knows? Maybe once his pain is managed, he may decide to pursue treatment again; but you two, with advice from your medical team, ARE equipped to make this decision. You owe no one else an explanation.

~Karen