Thanks to everyone's responses on the initial post I made -- both patients and caregivers -- Darryl has assembled this new place to go for all of us. It was a very dark week for me, and I was surprised at how much the various (quite various) responses to my "call" really helped.
We can all feel so alone at times when facing this disease -- and it can, ironically, become easy to wallow in our isolation. I'm so glad I reached out and much more glad that so many of you reached back!
I hope this will be a really positive space for us all.
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Caring7
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Look in your "My Hub" tab on the top menu. See if it lists "Prostate Cancer Caregiver." Mine already did -- not sure how (unless Darryl put me there?) But I think it is a separate site from the advanced prostate cancer site -- but parallel to it (so the same kind of site). I think.
Thank you to all who had anything to do with starting the caregivers site. I think it will be so helpful to so many of us. Whether patients or caregivers It looks like a comforting place and I thank you from my heart 💖
I didn't find this site until almost 18 months in, and yes, it was really good. Until then it seemed like we couldn't find anyone who was in the dire situation he was in (diagnosed age 51, stage IV with distant bone mets). I knew there were others but I couldn't find them! And in the grand scheme of prostate cancer it's a smaller group. Finally, searches turned up this site!
The first months are really terrible - sorting everything out. This site is a great resource for starting questions that you can followup with your doctor.
Hi Caring7 - my name is Genny and I'm wife/caregiver to Mike, 2a, Gleason 9 cancer at dx four years ago. We're now dealing with bone mets, a lot of pain, and a new treatment path: Zytiga, prednisone, and some upcoming radiation. So sorry to hear about your dark week. In my hubby's case, he tends to be a bit on the depressed side anyhow, so I won't and can't blame it all on the illness (sorry if that sounds harsh, but he's just kind of a crabby guy to begin with and knows it!) but the pain he has been in these last couple of months has definitely made things worse for him psychologically and his optimism about the new treatment isn't 'there.' I have a multitude of thoughts and emotions about all of this and sometimes I cannot believe I'm dealing with this situation. Hopefully, we can help each other in this group to sort through some of what we're experiencing in addition to offering some practical solutions. Take care
P.S. The radiation should help with the pain, maybe soon or within a few weeks after treatment. Encourage him to take painkillers too -- living with pain just intensified grumpiness!
For radiation skin "burns" (even just a little) -- Aquaphor works pretty well. (It was recommended to us by someone who underwent intense radiation.)
My husband has just had spot rad treatments (5 refractions each time to his spine) so pretty minimal. But to me -- comfort is key!!
My husband is on the crabby side too -- and just doesn't really have coping strategies. Well, he has one -- blame the wife for everything! (so it seems sometimes). We're in a pretty similar boat!
I know my husband has issues with change -- any kind of change, even if it's really positive, so I'm thinking that changing medication is kind of like moving to a new house -- it's good and hopeful on its own, but the change and anxiety it brings outweighs the positive.
It is very draining on us.
I'm not all that into support groups, but I did try the two caregiver groups near me, and I think it's good to have them available. My first meeting was during another "really dark" week about a year or so ago, and that meeting really helped. Another time I went, it was 'eh' -- But it's kind of a good "back pocket" thing. The only problem here is that the caregiver support groups only meet once a month. The good thing about them is that patients aren't allowed (well, strongly discouraged) so the focus is really on the caregiver issues. I'm not so much on the online groups either -- you'll see my participation oscillate quite a bit, but I have found this site really helpful because people are dealing at a similar level, and it's a different ball game than earlier stage PCa.
For you and your husband, you might try UsToo. There is a guy-vibe, of course, which might be helpful for your husband. They welcome partners to the group. I think like AA or whatever, it all depends on the group itself. In our case, my husband was the youngest and by far the sickest, so no one was really dealing at our level, but I've heard from others that there are UsToo groups who have more Advanced patients (unfortunately!) and those might be more helpful. so again -- check it out once? The one here also tends to invite guest speakers on drugs, treatment plans, radiation -- so the meeting is part support group and part educational. I don't know if that's the standard approach or not.
I'm here, and I think if you click on my name, you can message me directly and privately. If you send an email that way, we can communicate 1:1 via email. Or just here.
Good luck getting through this transition and remember to take care of yourself!! Do at least one good thing for yourself each day -- even something really small, and sometimes something big like an hour-long massage!! (Look for a massage school and get a student rate!)
Wow. . . we sound VERY much alike, Brenda -- support groups (ANY kind of groups, really) are not my thing, but I think this forum here could definitely be helpful as it has a singular focus. I have tried some of the other prostate cancer support forums, including the one you mentioned, and had decided 'No more EVER again' before joining HealthUnlocked. I am extremely impressed with the caring and helpfulness of the members - men going through this - and have learned a lot just in the last few days. I don't want to 'trash' those other groups, but I was stunned with the dogmatic manner some of their members seemed to have and felt they were very judgmental. I'm not the patient so I cannot *demand* my husband do such and such or *demand* that his doctor do a certain treatment -- much of it is out of my hands. What I can do, however, is to keep learning more and more so that I can provide something positive to a uniquely negative situation. And I agree: we do tend to neglect ourselves a lot; Right now I'm looking forward to spring and everything good that the warmer weather brings with it.
My husband has stage 4 with mets to the hip bones and some surrounding areas. He had radiation 20 years ago, and it came back about a year ago. First they watched it , and when it started to go up faster, they gave him Lupron. Six months later PSA 2.5 about a month later, it was 6. Will be starting Xtandi as soon as it gets here. He also has parkinson's disease. Since about the end of January, he has started not going out much. He won't go anywhere socially because he has issues where he has to be near a bathroom. All he does pretty much is watch U-tube videos of people doing what he would like to be doing. He has started expecting me to do everything, even the things he used to do around the house. He acts like if he has to do anything, that it is because I am too lazy to do it. I have end stage renal disease and am in the process of setting things up to go on dialysis in the next month. I do things without complaining. I figure whatever I do will help keep me more active even if he isnn't staying active.
Sorry I hit send too soon. The one thing I have done for quit a while when something happens that is probably his fault, or we don't know who's fault it is, is that I just say "It's always my fault" even when we both know it is his fault. I do it in a joking way so feelings are not hurt. By taking the blame always, I know it is not my fault, and he knows it is not my fault, but we can just laugh and he does not have to take responsibility but it doesn't matter. If I ever say something is wrong, and blame it on something he did, he gets upset and says "So it's my fault?" It is just easier to keep things on the joking side and always take the blame for everything without getting my feelings hurt.
My husband just looks at the cancer coming back and automatically thinks it is the end. He doesn't talk about what is bothering him. He doesn't even always tell me when he is in pain. He has just stopped doing all the things he used to love to do. I am not sure how to get him to be more positive.
I hope the 20 years in between were good ones. You are taking a very healthy attitude towards yourself, and really that's what you can control. (That is my mantra -- what in this situation do I have any control over . . . let everything else go. It works to a point at least.)
I'm not sure always taking the blame is healthy for you, but you're putting the best spin you can.
I wish I had a magic formula to suggest. Cat videos? Anything that can bring him joy? Looking at old pictures of your happy times? Not to be sad but to remember and laugh. Tell stories with each other?
He sounds truly depressed because he is focusing on things that keep him sad. You can try to shift this, but only he really can.
I've been there recently -- different style but same thing. And oh the blaming. I guess I take the blame too -- just more quietly. It's easier than fighting, because he just wants to fight, which makes him feel "right."
Keep taking care of yourself, and as you start to have your own intense health issues, keep yourself a priority.
My name is Charline and my husband is Chuck. I love this idea and happy Darryl set it up. I too don’t get too involved in support groups. But I’ve been at this for a while now and have found it helpful to reach out during difficult times to know I’m not alone. It is a hard journey with so many ups and downs.
Knowing we are not crazy. that we are not the terrible person the husband is acting like we are -- that's when I really need support. I have a friend who sometimes I just call and say, "tell me I'm not a terrible person." The energy and positive benefit that has come out of this "Calling Caregivers" post, now site, has really been awesome! I'm not a terrible person!!
No, you're not a terrible person, but - as you said before - it is very 'draining' on us. I know my husband appreciates that I try to help out by gathering info, asking questions, or even running down to CVS in the middle of work (luckily, we work together at the office) to get his prescriptions. However, I also work another part-time job and was frustrated tonight to come home and find the kitchen a mess, the laundry not done. . . I've already impressed - or tried to - on our 21 year-old sons that they have to pitch in a bit more now, but it doesn't seem to be getting through to them. And it's little stuff like this that makes me feel guilty for being angry, annoyed. . .tired. I guess that you could say Mike and I are loners, so that makes things harder yet: there just isn't anyone to reach out 'to,' so I'm grateful that someone thought enough of us here and what WE are dealing with to set up this forum. Each day I try to find something, no matter how small, to look forward to, but today I'm just not feeling it. I'm sure that there are plenty of 'us' out there who already know this.
It is so good and helpful to know that this forum is here now, every day and everytime we need it. I hope it becomes as large and active as the advanced prostate cancer group that "the boys" have. I will be telling others about this forum in my social media and hope that we share the link to our forum. I really need to know that I am not alone, too. My husband and family are great, but they are not going through the same stuff as "we" are.
I can relate to what all you wonderful women are gonna no through. I find myself wanting to escape on those dark days. Unfortunately, I have a demanding career that requires a bit of travel. While this gives me a break, I carry around guilt due to my absences. My husband doesn’t have a lot of friends where we live, but has reached out to a social worker....good and bad.... now I get reminded of how I’m not giving support the “right way”. It’s frustrating and challenging. Glad I found the group!
Try not to feel guilty about your time away. You need it! Maybe even consider getting a massage or go out to a nice dinner while you're away. I just had work travel and added a couple of days in New Orleans and it was so helpful. For the last two days there I just did whatever! And didn't stress.
Maybe get some help for yourself too?
You also might suggest in some way - or ask basically - if he thinks it would be good for both of you to go to the social worker together once. (I'm guessing the social worker is not telling him what is the "right" way -- as there is no right way.)
It's hit or miss I think, but you might see if there is an UsToo group(s) in your area. Partners can go too, so you can check it out together. It's all men (and partners) who are in similar situations, at various stages, but at least it is a "peer group" for this darned category we're all in.
The one here was all older men who were less sick than my younger husband, but we did attend a few guest lectures on various topics and new treatments, and those were really informative. But it might also give him a little bit of a social network if he connects with someone there?
p.s. my husband also had no really friends after 10 years living here, but somehow in the past couple of years he started reaching out more. And it's great! Less pressure on me to be everything.
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If not I'm wrong too...... which very well could be 😉
It looks like a comforting place and I thank you from my heart 💖
How much to interact with care?
