I was actually going to put this in the Say It Here thread, but recognize that people may have thoughts for the situation. DH has been dx w prostate cancer, with the biopsy soon and the course of action to be determined when those results are in. His family has a very strong history of most all cancers, so we were not incredibly shocked even though the gulf between “maybe” and “yes it is” was bigger than I thought.
We’ve spent a lot of time in the past, in hospitals. We have weathered several medical emergencies etc for me, for our kids, for my parents. The thing that I find really confusing at the moment is that despite telling his family and mine, and a few friends, he’s received absolutely no support. Not a call, not a letter, not so much as an email. He is terrified of the biopsy, worried that this is (as he puts it) the tip of a cancer iceberg. The reaction of those who know has uniformly been “well, that’s not a big deal, nobody dies from prostate cancer anymore” which is both mostly true, and totally not helpful.
I don’t want to obsess, but I don’t want to be unhelpful. When asked, he says he’s not worried, he’s fine, it’ll be okay but he’s waking up from nightmares shouting, verrrrrry quiet, isn’t eating. I tell myself to give him space and have been following his lead. But I confess I am pretty po’d at my siblings, his siblings, HIS PARENTS for just shrugging and saying nothing at all.
I am very sorry. I can relate a bit. H has an even “less of a big deal” cancer, or CLL. But it was a complete shock to us when it was discovered during pre-op testing for a hip replacement. It was very scary trying to figure out what exactly was wrong. We knew “leukemia” and my co-worker was undergoing treatment for leukemia - and died not long after. Once we got a better handle on what exactly he did have - and actually his Dad has had it for roughly 20 years - it’s somewhat better… but…
My family? One of my buttons is that nobody seems to care if anything goes wrong with us. If something goes wrong with my sister/family, you’d think the world was ending. My toddler kid had MRSA in his ears before people knew what it was. He was the first in our city and had to get ear drops specially made from the hospital. No pharmacy had antibiotics for it. My instructions were to give him enough to kill the bacteria, but not too much because otherwise he’d go deaf. But if I stopped too early, he would die. My parents and H’s family just shrugged. Years later my middle school aged nephew got MRSA on his skin - just had to go to CVS to get antibiotics. now that was a huge deal.
Similarly, with H’s cancer… my mom’s reaction was “oh that’s too bad” and then launched about how hard her life was putting in eye drops after cataract surgery. H’s family also just shrugged. They never asked/ask how he’s doing or care to give info about his Dad’s case and it’s progression. (and H’s family never asked how he was doing after either his hip or shoulder replacement. not a call, text, etc. ever.)
I mentioned my mom’s reaction to my sister, and she said that she thought my mom WAS worried. So maybe, if you look at it positively - his parents are super scared too and not saying anything or putting it down as nothing helps them to cope? It’s what I hold on to.
As far as dealing with H as the support person. H also likes to pretend it doesn’t exist. Talking about it makes him depressed and he’s struggled with depression a few times in the past. I told him I would be happy to talk about it or not talk about it - he just had to let me know if he wanted. I also go to all of his cancer appointments with him - and he really appreciates that.
I am really sorry. It’s hard. Cancer - of any kind - sucks
I’m so very sorry that your husband is not getting the support he needs from his family. That is so hard!
I pray that he will get good news and that people will step up and realize what a scary time this is for you both.
So very sorry to hear about the diagnosis as well as the lack of support. Sadly, family members can be so disappointing. I hope your kids and your friends can provide you both with help and solace in this difficult time.
I will hold a good thought for the best possible outcome for your H.
I’m in a few cancer groups on FB and, unfortunately, this is not uncommon. Some even say that they have been ghosted by all of their friends. People get super uncomfortable around cancer and often they don’t know what to say so they say nothing. The result is the person with cancer can feel very alone and even abandoned by those they thought they could count on. It’s just one more sucky thing about a very sucky disease. So the best thing you can do is just be there for him. You can be the difference between zero and one, and that difference is huge.
I’m sorry to hear about the dx and lack of support coming from the family.
I do think that good, caring people do sometimes struggle as to how to communicate with someone who has cancer. They don’t know what to say, don’t want to offend, maybe the patient/family member doesn’t want to talk about things, etc.
Once things are more clear for your husband and if treatment is needed at this point, I wouldn’t hesitate for him (and/or you) to share with people what would be helpful in the way of support.
I was just talking with a friend who has a medical issue (not cancer) who said only your mother worries about you if you are sick. I say forget everybody else - if you and your kids are there to support your husband that is what counts.
I’m so sorry about the dx and lack of support. H has prostate cancer too. It was a surprise but my sibs and BILs have been very supportive as have friends and the mds. I hope it’s not “the aggressive form” and a good treatment plan can be created for him. Wishing you and your H the best. Of course it’s hurtful when you don’t get appropriate support and others do. I’m very sorry about that too.
I watched my cousin and my dad go through cancer treatment with many rounds of chemo, and I saw how people who didn’t know how to respond either said/did nothing helpful or just fell out. I have a friend going through chemo right now, and her circle is shrinking. I saw this card in a shop a few years ago and bought all six that were in the rack:
Unfortunately, I only have three left. It’s tough to know just what the friend or family member might need, but the least you can do is tell them that you care and make sure you’re available for them.
I’m sorry you and your husband are going through this @greenbutton. I think you’ve started a great thread where I hope people will share their stories and suggestions. You know you can always rely on your CC family to do the right thing.
@ChoatieMom mom is right. You have a CC family that is willing to provide support for your journey. And hopefully give you words and feelings of encouragement or support that you can pass on to your husband.
Sending good vibes for the next few steps of the process for the both of you. Maybe with a little more info at hand your IRL family and friends will offer more support.
My SIL has been in treatment for breast cancer for the past year. I’m not sure how her mom would have reacted when she less confused, but she probably would’ve been about the same … not particularly caring or supportive. I say this because she was like that with her own husband as he battled end stage Parkinson’s, and MIL was mentally sharp at that time. We’d like to think she just isn’t good at showing her emotions in such situations, but we’re not 100% sure. I know that SIL is very hurt at the lack of support from her mom.
I’m sorry your H is going through this. I hope he will join some cancer groups, online & if possible, in person. Even though SIL has good family/friend support, she has found that community with folks going through what she is going through is especially helpful.
I wonder if this is why- perhaps they are all (wrongly) assuming that since you have been through so much medical stuff, this is just one more thing to add to the list. I am so sorry, I can only imagine how isolating and difficult this is. Prayers for healing and that your husband can find some support for his worry. Hugs to you all.
Stay strong and know if the biopsy shows cancer, he can beat it !! He will beat it.
Learn about the different options because there likely isn’t just one. Get multiple consults on each treatment possibility.
Having it diagnosed early is the main thing. He’s got this - on his own and with your help. It’s nice if others join but many don’t know what to say or how to act. You have this on your own.
Sometimes people wait until after the testing. (That is the most benign comment I can think of.) I do think people take prostate cancer less seriously, which is many cases is not right.
I had breast cancer. When I told my mother, she said “I was wondering when someone would get that” and resumed talking about something else.
Focus on where support comes from. Often people disappoint, but not everyone!
I’m sorry you and your husband are going through this tough time. It’s difficult. I also think that many people, even relatives, just don’t know what to do or say, which doesn’t make it any less difficult for your husband. Hoping for the best possible outcome for your H.
Yes, some of my sibs have been much more supportive than others. My family has been MUCH more supportive of H than his brother, but H and we are all on Oahu and brother is off in SF and doing his own thing.
I’m so sorry you and your husband are going through this. I am also sorry that the few within your circle with whom you’ve shared this are not showing concern and support. How hurtful to feel your very real concerns and fears are being minimized or dismissed.
I might be looking at this from the other side. I was in your husband’s situation a bit more than 10 years ago. I had initial surgery. Relatively soon afterward it became clear from blood tests that the cancer was still there somewhere, but there was not enough to find it. We all watched blood test results for a few years until there was enough cancer to look for it. Then a round of radiation treatments. It became clear immediately that we did not get it all. Then another year or so of waiting and watching test results. Then a second round of radiation treatments. Then something happened that we had not expected. The cancer became undetectable. It has been undetectable ever since (the last test was right before Christmas – my wife and I both got the Christmas present that we really wanted from my oncologist, for now at least).
The first reaction when they tell you that you have cancer might be that you think that life is over. Everything is about to end. You wonder what is next. You hug your spouse and wonder how many times you will be able to do this again. You watch a sunset and wonder how many more you will see. Normal everyday things seem less real. Then you get test results and the doctors talk about treatment options. Maybe life is not quite over yet. Gradually you get back into life but with a somewhat altered focus.
I think that for the kids the whole thing was probably rather scary. We tried to appear to be not too worried. I am not sure how successful I was, although by now we have all gotten used to it.
I think that many people do not know how to react. Having dealt with this for the past 10+ years, I still don’t think that I know what to say. Some people might also find the entire subject too scary and not be able to deal with it.
For the patient and spouse, you can’t ignore this. Cancer is staring you in the face. Mortality is very real. For the kids, probably it is similar. For everyone else, perhaps if this is too difficult to think about they just don’t deal with it. They might appear unsupportive partly because they don’t want to think about it too much.
One thing that has been helpful to me is doing things with my family, particularly my wife and kids. Sailing, biking, graduations, with family all are something that I probably appreciate more because I have learned that life is temporary and precious.
Another thing that is important to me as a father: I want my kids to live their lives. I do not want to be a drag. Cancer happens. This doesn’t mean that I would want to hold my kids back. Their successes are major positive things that to me make dealing with a small annoyance such as cancer (and “I might die”) easier to deal with.
Best wishes. I know that this is tough. I think that it is probably just as tough on you as it is on the spouse who has cancer. This might change your perspective on life a bit.
I admit that I don’t think I’m very good at responding to friends and loved ones about cancer. And my kid had cancer! I question how I responded, how I acted, how should I be and what I should do.
It’s hard
My fil had prostate cancer and although we talked to him, I don’t remember being too concerned. My in-laws said the prognosis was good, he decided on a certain treatment and that was that.
My daughter things were different in that at every stage of treatment it was a harder treatment than she anticipated. More invasive surgery, chemo, radiation and now a 10 year oral treatment. This is to give her the best prospects for the future which are really good. We were in shock but tried to do our best. We let her lead any conversation because we know that is the best for her personality. Was it what we should have done? I don’t know? We were very worried and said repeatedly that we were there for her.
Just last week, we got a call from someone that their loved one (who we don’t know that well) had a very bad preliminary test. There will be more testing but there was no way to sugarcoat what they were saying. If proven, it will be a grim prognosis. We just let them talk and said we were sorry.
That was one hard phone call. The ones where the future looks bright and treatable are better.
Several years ago, DH developed motor skill problems severe enough that we spent nearly a year with doctors figuring out what was wrong, and for some period of time they were thinking ALS which gets your attention. (It wasn’t). We were overwhelmed by people wanting to check on him. I guess I expected his family to have an interest in this new thing, but maybe they are just waiting for more info. That’s fair.
Our kids are handling it well, and as a family we are pretty good at being attentive/concerned without disrupting 100% of regular life. I wish that weren’t the case, but you manage with what you are dealt. We had a trip planned that we are still taking and then when we get back, the results will be here. We really only have one medical system where we are, so I don’t know that we’ll want to explore other (further) options for something that seems to be a routine cancer, if there is such a thing. He’s already had an MRI after “watchful waiting” and another good thing is that we had all my medical adventures last year, so I am good to go. I hate not being able to make him feel better.
