One year and change... and change... and change

[CantChoose]

Hubby was diagnosed in April 2019. We're the ones where he almost died the week he was diagnosed after a botched kidney stone procedure.

I think I have some crazy form of PTSD. I live in a world that's semi conscious. I love the pandemic, because every day is the same and I have time with him. At the same time, I absolutely hate it and know it's unhealthy. He shares very little with me - - he's just gritting his teeth and getting through the days. All his energy goes into his job. It's a great distraction and, of course, he worries about keeping insurance. We both just want to pretend things are OK as long as we can.

I've had two women in my "diagnosed same time/level" circle lose their husbands this week and it's freaking me out. I'm so sad for them and yet I really don't want to reach out. I'm a damn superstitious monkey. My subconscious does not believe it's not contagious. My conscious mind tells me I have no reserves. My super ego wants to be a good person, but I wake up and go to sleep hearing a little voice that says *run away.*

My husband. God, my husband. He is suffering so much. The arm he broke and had surgically repaired in February hurts to the point I'm worried he has rebroken it. He doesn't get out of bed weekends, and is slow on work days. He can no longer sit in a chair a full day. He tells himself - and me - that the pain is from Xgeva. That the pain is the Zytiga working. That the pain is anything other than the cancer eating him from the inside out.

I'm drinking too much. That's probably obvious from this post. I no longer know how to help him, or help myself.

Love to you all. Thank you for letting me dump it all here.

[mangeycritter]

Hello CantChoose,

There are many dedicated posters on this site who are quite knowledgeable and sincerely interested in providing information and help for sufferers such as your husband and you. Please read their replies and trust their suggestions. Please do not lose hope.

mangeycritter

[tom67inMA]

Hi CantChoose, thanks for posting as you made a couple points that resonate with me.

My guess is you almost certainly have PTSD. It's common in cancer patients. It doesn't make us dive for cover in response to any loud noise like a war veteran, but it does screw up our perception of things.

In the time since I developed neuroendocrine cancer earlier this year, it's killed several members here and I haven't even been able to write a "sorry for your loss" reply. I'm not in a place emotionally where I can go to "virtual funerals" here on the forum, for lack of a better term for the "lost my husband/father" posts. It's not just you, it's very difficult to focus on the living when your support system is dying off. Thus the PTSD?

The problem with pain is it's a non specific symptom. For the majority of the pain I've experienced during treatment, it has been the treatment working, except for the painful urination which was the neuroendocrine tumor growing in my bladder. I've ignored so many symptoms and 90% of the time they should have been ignored.

For me, the best way to live with cancer is to throw myself into daily life. But with my current fatigue, pain, and the pandemic that feels impossible. One day I'm thankful to be sitting outside reading a book, the next day it hurts too much to sit. Arggh.

Thank you for the opportunity to respond to your dump with a dump of my own. If there's a point to this reply, it would be that we are very likely underestimating how difficult it is to live with symptomatic cancer in 2020.

[CantChoose in reply to tom67inMA]

Amazing insights, reassuring to know ignoring pain is mostly the way to go. And yes, the virtual funerals are tough. It's amazing what even the "so sorry for your loss" costs emotionally. I used to be annoyed at the people who post the praying hands icon. Now I at least understand why.

The point to replying is to help me (and hopefully you) not feel alone. It worked.

[Hidden]

My God , you speak so real.. “A botched kidney stone ? Omg 😳 horrible. I was under a urologist care waiting for him to go and return with his kids from spring break to get a biopsy on my giant prostate . It took five weeks? I didn’t make the biopsy. I went into k failure from pc tumors blocking my bladder and urethra. Two years later after I got the tubes stints and foley out the tech told Us ” Now we try to get advanced guys biopsies very quickly after your debacle. “ I said “ that’s good”?

[CantChoose in reply to Hidden]

I think we are also a cautionary tale. Glad you made it through.

[Hidden]

PTSD is normal with this BS disease.. I call it “ post testosterone syndrome disorder..

[Kaliber]

Hi cant...... like Tom I feel compelled to say something ... but like him I’m not sure what to say as well. I don’t want this to end up being about me , Ive been scraping the bottom of the barrel lately myself which makes it really difficult to contribute much of anything upbeat .

A Couple things tho. You said your husband is still working tho having difficulty. The fact he is still working , or is able to at all makes it seem like he is WAY up the drain plug from where myself and many here currently are. That of its self seems / sounds like a positive thing to me. Its probably not very encouraging to say it like this ...... but ... he’s way better off than ( say ) I am .... and that’s a bit of positivity that you can look towards. To me , the vastly more important thing about your post is not your husband as much as it is you. From my croaker perspective , your husband is extraordinarily lucky to have a wife so involved and so deeply concerned about him and his state of being. Not all of us have someone like that .... it can certainly make a person envious when he sees that your husband has such a person as you by his side. You deserve a lot of credit for your deep concern and love for him. Since I have deemed myself capable of awarding such things ( croakers closest to the drain can do that you know ) , I’m giving you the gold star award in the category of “ wonderful cancer support wife “ , and here it is ....🎖 ..... , please wear it with all the dignity and pride that you so richly deserve. What a lucky guy your husband is..... what a wonderful person YOU are.

Also .... if your husband is diagnosed stage 4 , then he is in the “ palliative “ care realm and there is no reason for him to put up with or suffer with much , if any , pain at all. He should get with his medical care team, the pain management person/s and they will gladly and effectively reduce or even completely Eliminate his pain quickly. If he’s stage 4.

I’m thinking good thoughts for you and your husband Cantchoose 💪💪💪👍👍👍

Btw: there are many great Support sites for cancer support wives such as yourself, I think this site even had them. Sometimes it’s just good to be with other ladies such as yourself to share the grief and get ideas to deal better with it.

[CantChoose in reply to Kaliber]

I do have other sites for wives, but right now I have trouble getting support there because everyone is dying and I don't feel like I can unburden my stress and problems to women who just lost their husbands. So...i come here and burden you guys instead. 🙄

Thank you - the award is sweet and you are right. I need to see that we're still in the lucky stage. I was just having an enormous pity party last night. Sometimes the emotions are so crazy that I cannot even tell who I'm sad for.

My husband now has a palliative pain specialist on the team, but he has a unique reaction to opioids and we're struggling to find good drugs. Plus, the arm may be broken again and the surgeon has told him it cannot be repaired a second time. He has lytic lesions that are eating some bones. I did find a Pfizer clinical trial we may be able to pursue.

Thank you.

[Kaliber]

Cantchoose, you are welcome to come here and unburden yourself as often and as much as you need. Not only do you benefit from letting go of unwanted emotional pressure caused by this awful disease .... everyone here “ getting it “ and having a deep understanding of your pain and suffering ....

Plus , speaking for myself and probably every other poor stage 4 sapsucker here .... we , .... all of us ...we need and want someone to hold us ... hold our hand, kiss us good-bye in the end and ....hopefully ... grieve for us a little when we are gone. You are the perfect example of proof that there are committed loving wives / companions out there that will be there for us in the end. You will hold your man and say good-bye without hesitation or question ... the perfect example and proof that’s it’s possible for the rest of us too. Speaking for myself at the very least .... I somehow find that reassuring and comforting . It’s out there , you and ladies on here like you are proof positive. in the end, I can only hope my lady will hug me , hold my hand and kiss me good-bye ... even grieve for me a little at least ( and not say “ finally !!! “ and throw a “ new horizons “ party for at least 48 hours yayahahahaya).

[j-o-h-n in reply to Kaliber]

"in the end, I can only hope my lady will hug me , hold my hand and kiss me good-bye ... even grieve for me a little at least"

If she reneges, don't count on me..................

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 6:14 PM DST

[Kaliber in reply to j-o-h-n]

Well if she does renege , about that time it’ll be too late to give you a call buddy yayahahahaya. I wanna think she will , and she might .... but probably odds are only 48 - 52 against it at best. ( that’s the glossy version )

One scenario is “ remember that Sunday afternoon ..... May the 14th, at 3:47 in the afternoon , back in 1979 ... when you yelled at me you .. s.o.b .... ( whaaaaaa ???? ) .... well I told you I’d pay you back !!!! “ ..... that’s one possibility. Tharze a good reason why I call my wife “ the hammer “ . Yayahahahaya yayahahahaya

😂😂😂😂😂

[j-o-h-n in reply to Kaliber]

and you da nail.................

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 6:40 PM DST

[Kaliber in reply to j-o-h-n]

Yayahahahaya yayahahahaya .... well more like the rivet. You know the stubby round ones you see on big suspension bridges yayahahahaya yayahahahaya.

😂😂😂😂😂😂

I wouldn’t say it out loud here ,but the real story of my 44 year long marriage to the hammer is far more bizarre and jaw dropping than you’d ever guess yayahahahaya.

[j-o-h-n in reply to Kaliber]

I guess they were riveting!

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 7:30 PM DST

[Kaliber in reply to j-o-h-n]

😂😂😂😂

[j-o-h-n]

Well if you CantChoose that means you can never Lose.

I just love to see when people Dump here.... it gives me ideas when I dump on my wife.... so keep it up.... So has your husband has always been the type to rarely share with you and sit there gritting his teeth? One way to get his attention is when he's working his butt off... just sneak over to him and grab him by his giglets..... that'll get his attention. So if you can, tell us what kind of work does he do? You and I share the same kaka.... we don't like to write condolences.... I rather write funny stuff.

You're a good wife dealing with a lot of bad kaka and it's taking it's toll on you. But keep posting here.... we understand. As far as death is concerned think of it like going on vacation and forgetting to take your luggage with you. I don't know your first name otherwise I would say. XXXXXX keep your powder dry and -

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 6:46 PM DST