We see what our spouses are going through. It is heartbreaking, sad and depressing. It is really hard not to show it because the last thing you want to do is make them feel worse. No one else in our lives wants to hear about our sadness so we suck it up and put one foot in front of the other putting on a happy face for everyone. This is tough stuff.
Sad and down but can’t show it - Prostate Cancer C...
Prostate Cancer Caregivers
You need someone you can talk to! Support group? That one close friend? Please don’t try to go it alone. Are you in the spouses group?
I see from your earlier posts you have been at this for nearly 5.5 years. Our journey has just begun and Pca consumes so many of my thoughts. My heart hurts regularly when I let myself venture down the path of what if.
It is a lonely existence as only those who are walking the journey can appreciate the highs and the lows.
My husband is very against the fight until he ‘has to’. Although after consultations with and MO and RO, recommended adjunctive therapy is not even being concern. It hurts because there is a part of me that wants him to fight this fiercely, I also don’t want to put him through discomfort if it is otherwise over treatment.
I really want off this ride and I want to go back to the innocence I once had, long before I really knew how rapidly Pca could steal my hopes and dreams in a blink of an eye.
You are not alonand know that there are other wives out there struggling though the unbelievable sadness, frustration and emotional paralysis tha goes with this wretched beast.
With you in spirit and you are not alone.
Responding to your "until he has to" fight part. Fighting early is best -- not only to get on top of the disease but to have a longer life expectancy (much better chances) and an enjoyable life.
For what it's worth, husband started with Gleason 9, Stage IV, distant bone mets, did immediate Lupron/Casodex + early chemo. The worked for a bit, then he became "castration resistant" so we threw more stuff at it, Provenge, some 5-day spot radiation to bone mets, Xofigo, and Xtandi. After two years of fighting (and it wasn't all bad times), he did great for more than 2 years while the Xtandi was working, and then he got another few months from abiraterone.
In many conditions, especially this one, early intervention has much better results. Trust me I know how difficult the guy can be about various things in the process of disease, and how hard it is to stand back and let him (and realize we just don't have a choice other than a gentle coax here and there, that might lead to a head-biting-off moment!) I hope maybe he will come around to treatment that will help his body fight this before it digs in. Best wishes to you - Brenda
Too tired to respond right now but I know about the happy face.
There is no easy way to talk about what you are going through as a spouse, significant other or care giver. If you are cheerful, people understand this to be every thing is good. I decided to talk frankly about what we are going through with some close girlfriends at a dinner party when they inquired about how things were going. Two of them started telling me about all of the friends they knew who died of cancer and the other two said absolutely nothing. I honestly do not know how to talk with anyone any more. I just answer....."We are doing okay." I understand exactly what RaMa is saying.
We are “ok” has been my response as well . Total lie !! Friends, family co workers don’t understand nor do they want to hear . Two years in 81 year old spouse Gleason 9 Bone Mets to spine and lung . Radiation (20) Lupron injections for two years every 3 months . Prednisone 5mg daily .. PSA monitoring .. as it’s a yo yo ! Tomorrow is his next test . Very difficult road and truly unpredictable. I am a 63 year old healthy working ( full time ) wife of 35 years . My personality has changed through this journey . I am no longer the happy go lucky “ life is good “ lady I once was . What you see on the outside is definitely NOT what is happening on the inside .
That’s exactly what I have found. No one really wants you to tell them that you are overwhelmed and why or be ready to hear details about things that are tough. They asked about my husband and seem more interested to hear what he has to say. That’s good I know. Just leaves us with being a cheerleader crying on the inside for what our lives used to be and the sorrow of watching our spouse suffer. Today is a good day here. I’ll take it. I try not to get sad over what we used to have but instead focus on other things. I found a group of women who fund raise for a children’s hospital and surrounding myself with these kind hearted people had helped. Children with cancer puts things in perspective too. Side note: I don’t know why but it helps me to get deliveries of boxed meals I can fix. I don’t have to think of what to cook every night and go to the store and it gives me something creative to prepare. Ah, the little things.
I am fortunate to have a couple of friends who get it, who get what I'm going through. One works at a cancer center and another lost her husband to ALS recently, and a couple more really do ask about me. So I'm covered pretty well -- although still surprised at reactions like those described here. Because I have decent support, I think I let the others roll off, but it really gets to my husband. He's had people ask about his cancer to just launch into their own cancer stories. Yeah, thanks a lot -- and they don't even follow-through on his update!
Talking to some "same boat" people, we all realized that people surprise you. Some people cannot deal with their friends dying and just drop out, or don't say anything; some people get tongue-tied and don't know what to say, say nothing, and end up in the former group (can't deal) -- and then there are the surprises. People you don't expect to be helpful just because maybe they haven't been your closest friend - actually "get it" and are super helpful.
My dad died when I was in college, cirrhosis from alcoholism, so emotionally complicated, but I learned at that young age -- people are weird, and rude, and other people are truly helpful. Death and dying is a difficult thing for our society, and most people don't have resources for it.
Our approach is to be up front and at times humorous about it, just matter of fact with everyone, and the ones who can be supportive will be. And the others, well, for whatever reason they can't be there for you - so look elsewhere. The number one person to take care of you is you! Oh how often I need to say that to myself!
I hope you find someone that gets it.
Yep. Wish we could go have coffee or a glass of wine.
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