What have you been struggling with lately?

[Cleodwoman]

I know that as caregivers or in my case, a widowed, there’s always something that challenges you mentally and emotionally. Today, I’m going out of town. When my friend suggested we get away, the idea sounded great. Today, not so much. I wish I wasn’t going. Brian and I traveled together always. It feels like I’m leaving him behind. Also, I’m afraid to face my feelings. To get on that airplane without him. To explore without him.

We have been forced to live a life with didn’t ask for.

What is everyone else struggling with today?

What is this life forcing you to do?

[Yadifan]

I know the feeling of not looking forward to something that sounded like a great idea days ago. I'm hoping you can find some joy on your trip and that it will give you the strength to plan a next one. I'm sure you carry him with you every day and think about how much he'd like something or how funny he'd think something was. Just getting out of bed and going through your normal routine can be a struggle and maybe even a miracle. You doing all those things honor Brian. You posting here to reach out and moderating to help all of us honors him. I'm in awe of your strength in doing this. This is the same strength that will help you get through all the things.

Right now I'm feeling anxious over lab tests on Tuesday. It's been 6 weeks since my husband's doctor decided to give him a break from chemo after 9 sessions. He's been feeling pretty good this last month and it's been so nice. I know I'm supposed to live in the moment and embrace these times...and I mostly am. But I also know how shitty this beast is and feel the need to brace myself for whatever is next.

Sending you hugs. Hoping this is a nice trip for you. Hoping for some happy moments for you.

[Cleodwoman Moderator in reply to Yadifan]

Hello Yadifan, how are the labs?I know what you mean. We try our best to enjoy every minute, but cancer is always there. Staring at us.

I had awful anxiety for two weeks after Cleodman received the LU177 treatment. I had never experienced anything like it. I started to play "Wordscapers" on my phone. It helped keep my mind occupied for a bit while I calmed down.

Please keep us posted.

[Yadifan in reply to Cleodwoman]

His PSA went from 1.2 to 2.6 in less than a month. His doctor called yesterday and is ordering a CT scan. So now we wait. But I won't wait for long. I tend to be a very squeaky wheel. But even waiting a day can be hard. "Staring at us". I do feel it staring at us! I'm getting tired of trying to pretend I'm okay. I'm scared to lose him. His cancer is aggressive and I think it's actually angry right now. My hubby seems so calm. I know he's scared too.

[Cleodwoman Moderator in reply to Yadifan]

Oh no, I was hoping to hear better news. I don't know how they can appear calm. I think they do that to protect us. Cleodman used to be like that too. They process things differently. I believe they start to prepare their minds for the inevitable while we run from it. Of course, we don't want them gone. We don't want to think of that.

When your mind starts to wander, remember that he is still here. Enjoy him as much as possible. Make him laugh and take lots of videos.

Please keep us posted on his CT scans. Also, have you guys looked into the LU177?

[Yadifan in reply to Cleodwoman]

We're very interested in LU177. I've heard that this summer it will be offered at a Las Vegas hospital. We're about 5 hours from there. Also want to talk to his doctor about Xofigo. We had a Foundation One study done about 6 months ago. There really wasn't anything actionable per that report.

Thank you for knowing. And for your helpful words. Planning a short trip right now to Greer. And we're both smiling about that. I'm grateful for these days.

[fluffyfur]

Well depression. Hubs lost his job due to his radiation treatments and frankly he is severely depressed. I have begged him to try meds and he refuses. It's hard to see him in this state. Any suggestions would be appreciated. He exercises (walks several miles a day) but it's not enough.

[Cleodwoman Moderator in reply to fluffyfur]

It is tough to see them like that. My husband also had to stop working, and it was difficult. Your husband is grieving. He lost something. Something that was a part of his life. I know that when my husband was feeling down, I felt helpless.

Are there any house projects that he can work on? I would remind my husband of how much I needed him to get things done. I would ask him to help me with chores and things to keep him busy and feel useful.

Maybe have family or friends come over for a game night? Not sure how his appetite is lately but maybe have a date night?

Everything is easier said than done.

I looked up ways to help someone with depression and came across this page. I identify with some of the things it says.

It also gives tips on how to start conversation and how to better support them.

helpguide.org/articles/depr...

I hope this helps in someway. Please keep us posted.

[fluffyfur in reply to Cleodwoman]

Yes he's finished with all the house projects since he got fired a year ago. We had a whole slew of things needing to be done and now he has knocked all those out so I'm at a loss.

We don't have friends or family. I mean he does have family but they live far away. It's hard.

[Cleodwoman Moderator in reply to fluffyfur]

I wish we could somehow be all together in times like this. Hey! maybe we could do a zoom meeting sometime if that would help you and him? Maybe others would want to join also?

As caregivers, we want to fix everything, but sometimes we have to accept that we can't. All we can do is be there and show them that we are not going anywhere.

Have you thought about taking a short road trip?

I am just throwing ideas out there. You are not alone. Please keep us posted.

[NWLiving in reply to fluffyfur]

My husband has been on Effexor since the start and it has made all the difference- very mild, very effective, and helps with hot flashes. I can tell when he has missed a dose or two. Would he listen to his doctor? Such a simple thing. Once your body had been under stress for some time, it really becomes a medical issue treatable with medication.

[fluffyfur in reply to NWLiving]

No he doesn't want to take any meds at all. He used to be on effexor years ago and then wellbutrin. He says they give him too many side effects so won't take them nor will he speak to a therapist. At a loss. I am tired of being his mother.

[NWLiving in reply to fluffyfur]

Yep. Too draining to be the pestering mother. Thanks for letting me know.

[Boywonder56]

I hope this usnt for wifes of apc guys only....im dealing with a wife that doesnt want to admit that her superman has met his kryptonite...the treatments lupron/erleada have me very fatiqued...and the more this goes on the less i feel like "going on"....i 'd rather have what time i have as me not some semblence of the guy i was.....there ive said it....cleodw....any input ...am i being selfish....

[Yadifan in reply to Boywonder56]

I think that maybe us wives are the selfish ones. We want to hang on to our guys as long as we can. The thought of her world without you is a hard thought to have. Says a lot about her. And you. Such a tough battle. I'm so sorry for your pain.

[Cleodwoman Moderator in reply to Boywonder56]

I agree with Yadifan.

We are the selfish ones. I didn’t want to see it. I didn’t want to see my husband decline. I didn’t want him to stop being the energetic, full of life man.

It wasn’t until he sat me down and with his calm and patient voice explained to me what you wrote.

He expressed his feelings. He told me he wanted to enjoy his days as himself. He wanted quality over quantity.

It was devastating to hear that. And he knew it.

But it wasn’t until I saw how much courage it took to get to that mindset that I accepted it.

I know that it has taken you some time and lots of courage to get to this point. You’re brave and this is your journey. You deserve to have control over anything you can.

It definitely sucks for us. It hurts and breaks us but this is the sacrifice we make for love.

I know that if you could, you would do anything to be her Superman. You are also making a sacrifice for her.

[tmfo in reply to Cleodwoman]

I think if it was just me, I would be more accepting of quality over quantity but, we have 6 kids. Four of them are still living at home and our youngest is only 8. She is SO attached to her dad. I need him to hang on for as long as he can for her. If it was up to me I would just want to make sure he does not suffer a minute more than he has to. I love him so much and I will keep him with me as long as I live anyway.

[Cleodwoman Moderator in reply to tmfo]

Oh tmfo, yes, your situation is different. I am sorry. This is just so unfair. Six children. Yes, of course, they need their dad. We couldn't have any kids, but before passing, he told me that it would be much harder to leave if we had kids.

I know you must be trying to keep it all together, not just for him but the children. How are they doing with everything?

[tmfo in reply to Cleodwoman]

My kids are not very aware. I think most of them still think their dad is invincible.

[Boywonder56]

oops i just read the post/group heading....blame it on the lupron....my apologies.

[Cleodwoman Moderator in reply to Boywonder56]

No apologies needed. We can definitely give you our perspective as wives/caregivers. And hey, maybe your wife wants to join this group so she knows that she’s not alone.

See post below for my input.

[Boywonder56]

Thanks for the words only someone who has expierenced this journey could say..what you are doing is remarkable...your kharma bank will be overflowing....in the words of elp...what a lucky man he was...

[Karmaji]

Mind plays an important role facing loss of loved one.....An old Sufi story....A sufi master had a son whom he loved so much....he was all his life.

One day he died and great sadness...

Later Wife finds the sufi husband in high mood , laughing as if loss of his son never happened.

She was surprised and asked...

Sufi says that I got connected with my Self who I was before my son was born....

A happy cheerful dancing mind.....

[WVtwinsmama]

Today I sit on our screened in porch with our pets, while our children sleep after an evening visitation at the funeral home for my husband, their dad. Today we have the graveside service, a military service in honor of his Marine Corps service. Sitting here thinking of everything. Looking around at all the places he is and will forever be present in our lives. I’m thinking I don’t know how I’ll move beyond this, but I know I will. Last night someone asked me “how are you so strong?” I replied this is a lot easier than sitting by his hospital bed for the last 2 weeks literally watching him disappear before my eyes... THAT was a lot harder, but I was there, every day, for him. Sorry, but that’s what’s on my mind this morning. Thank you for this group. I think I’m going to need you. 💔

[Cleodwoman Moderator in reply to WVtwinsmama]

Oh WVtwinsmama…I’m so sorry. I wish I had the right words to give you a minute of comfort.

The most meaningful words I got were…”This hurts and it will hurt more as the days go by”

We don’t want to hear that but it is the truth.

He will always be with you, always.

No need to be sorry…we are here for each other.

[fluffyfur in reply to WVtwinsmama]

I am so sorry for you loss. This disease sucks.

[Fdccs]

Hi Cleodwoman,

How did your trip go? I hope there were some moments of joy

It's such an amazing thing you're doing, being here for other wife's. How are you feeling?

Lot's of love from the UK to all caregivers, near and far. It does help not feeling alone x