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He's given up...or on the cusp of it

He's given up...or on the cusp of it

Posted by soulwynn on Mar 12, 2019 1:45 am

We have so much death surrounding us right now. My partner has stage IV colon cancer diagnosed in May. None of the chemotherapy treatments have worked. He isn't a candidate for radiation or any type of surgery. Doctors are acting as though this is it. He's been in the hospital for a month now and even though his bypass surgery was successful he has felt so weak. The nurses are a little too easy on him, no one is motivating him to keep moving. We are looking at hospice care for him as I can't be home all the time, and he can't be home alone. Once he is in hospice he can't receive any treatments. But we haven't tried everything. I realized a while back that Immunotherapy had been mentioned to me by a lady I was speaking with at work. So I started looking into it and realized this was something we hadn't tried. I am trying to get more information....however with all the arrangements being made to prepare for his death, I know that a large part of him has accepted that this is the inevitable. Up until a couple days ago I was in agreement that this was likely the direction we were heading. 

When I spoke to him today: explaining that I had not given up and that it would not be easier on me if he died (he doesn't want people to suffer because of him), he expressed how tired and exhausted he was both emotionally and physically. He had also said a couple days prior that he wasn't ready to die. So I feel that he is fighting still, but doesn't know how to hang on to any hope. He also doesn't want to feel more sick than he does right now with more treatment so, I just don't know what to do. I don't know how to help, how to keep him feeling hopeful even though everyone is preparing for his death. I know a lot of this is willpower and he is struggling so much. I know he has to want to get better, and that his desire to survive has to be strong. I wish I knew how to help him feel stronger.

If anyone has any advice on how I could maybe help to motivate him? I also don't want to push too hard because I don't want to make him upset...

Re: He's given up...or on the cusp of it

Posted by ACH2015 on Mar 12, 2019 7:19 am

soulwynn‍ 

I am sorry you and your husband are at this stage.

My father died of brain cancer, he was not cognitively able to speak to his own wishes toward the end of even just his diagnosis. We as a family decided to keep him strong with nourishment and fluids until a diagnosis was finally made.

Once we were told there weren't any treatment options, dad was moved to palliative care, and he died in a peaceful home like setting where family could come and go or stay as long as we liked.

My friend recently died. We met early on at a hospital 2 years ago. It turned out we had the same cancer, and we kept up with each other in support and seeking treatments right up to her death.

Deb was told on Jan. 06th that there were no more treatments. Deb died on Jan.26th. Chemo, multiple radiation, and immunotherapy treatments were all part of her treatment plan.

Deb's condition eventually rendered her unable to tolerate a return to chemo, she had already received a lifetime limit of radiation, and the immunotherapy was stopped because of cancer progression and metastasis.

A combination of multiple worsening complications and an inability to tolerate or find any available treatments lead to the inevitable.

You question weather or not immunotherapy can play a part in control or cure. Satisfy that question, and ask the specialists if there are any potential treatments or clinical trials your husband may qualify for. You also have to run that by your husband, his consent is required like any other treatment.

You certainly have and are having those difficult questions with your husband. You have expressed your love and selfless desire to continue to look after him. He has told you that he is both emotionally and physically exhausted, and is understandably torn between the living and dying stage he is at. You are supporting him so lovingly, and continuing to do so will serve both of you so well.

I don't think any of us are ever ready for the death of a loved one, nor is the patient.

I commend you for your strength and courage. You have and are doing everything you can, and there is no right or wrong answer here.

Satisfy your questions, keep the lines of communication open as you are doing, and be at peace with your husband's wishes as best you can.

One thing I will pass on related to palliative or hospice care. It was important for both my father and friend to have the ability to receive pain medications (injection or pill) as needed. Any setting you are seeking for your husband, ask about this ability.

Keep well, and know you are doing all you can. Be at peace with that.

ACH2015

 

Re: He's given up...or on the cusp of it

Posted by soulwynn on Mar 12, 2019 10:51 am

ACH2015‍,

Thank you so much. I often feel like I'm not doing enough. Like maybe I put too much trust in his doctors and thought they would just exhaust all the options. And maybe in their minds they have. But I know he sees how much I want him here, and to be healthy again, and that I'm not done fighting for him. Even if we can't get any more treatment for him I will keep fighting in my heart until he takes his last breath.

Thank you again so much for your words of encouragement and compassion. I hope that your battle turns out positively for you. ❤

Re: He's given up...or on the cusp of it

Posted by Lacey_adminCCS on Mar 12, 2019 11:37 am

soulwynn‍ 

I agree with ACH2015‍ it is important to ask his medical team all the questions that are playing on your mind. You need to have all the information and your questions answered in order to make future decisions and take next steps.

Will you have a chance to talk to the Doctor today? Have you met with the Social Worker?

Lacey

 

Re: He's given up...or on the cusp of it

Posted by Brighty on Mar 12, 2019 11:41 am

soulwynn‍  I've been following  your story and my heart goes out to you.   Sometimes  the only thing you can do is be there for the person. . Let them know how much you love them.   You've already  done that.     He knows you love him.    I'm so sorry  you are going through  this turmoil.    I hope you are leaning  on others for support  and you will continue  to lean on us here.     

Re: He's given up...or on the cusp of it

Posted by soulwynn on Mar 12, 2019 12:26 pm

Lacey_adminCCS‍ 

Thank you. I haven't spoken to a social worker, and I haven't spoken to the doctor that's been assigned to him while he's been in the hospital.

I just found out today that he's going to hospice tomorrow. I know that he isn't allowed to receive any treatment while he is there even if he wanted to. And he hasn't been receiving treatment for probably over two months now.

I have been seeing a therapist for a long time. So she's been the one to hear everything from the craziness that is my mind.

I have called and left a message with his onchology nurse at the cancer clinic in London asking some questions. But I haven't heard back so I plan to follow up at the end of the week. He had done a release form for something called OCTANE where they release all the genes found in a tumor. I'm going to call and follow up with that as well.

There is a sinking feeling in my gut that this really is it. But I will do my best to give him any hope there might be, and if he decides to leave hospice to come home and get treatment...well like it sounds ridiculous but love makes us hope impossible things.

Brighty‍ 

Thank you so much. I don't know what I would do without this site. Sometimes I feel bad because I'm very wrapped up in my own story. But once everything is settled, however that happens, I want to give back to this community by trying to support others too.
 

Re: He's given up...or on the cusp of it

Posted by Lacey_adminCCS on Mar 12, 2019 4:18 pm

soulwynn‍ 

Thanks for taking the time to update us. Your love for husband shines through in your posts. I'm sorry to hear you are at this stage, it is so difficult to hear that there are no more treatment options. 

I'm glad you reached out with your questions. I hope knowing you asked all your questions brings you peace of mind. 

Thinking of you,
Lacey

Re: He's given up...or on the cusp of it

Posted by Cynthia Mac on Mar 13, 2019 1:32 pm

soulwynn‍ , allow yourself some time, and know that formally, or informally, we would welcome your contribution.

Soulwynn wrote:

But once everything is settled, however that happens, I want to give back to this community by trying to support others, too.

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