Husbands/Partners of Stage IV Breast Cancer
Comments
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Batfax, we are really sorry that you are here, but happy that you found us. The worry and the waiting is excruciating. If possible, try and distract yourselves, and take one day at a time. We'll be hoping for the best possible outcome for your wife, please keep us posted, and know we are here for you.
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soscaredhubby and yougotmel, Please send updates when you can. We are all here for you!
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Bad news. Still waiting on PET scan results, but we got back blood work. CEA is off the charts, 2,000+. CA 15-3 is double the max of the normal range. We won't get the results until early next week and we can't get in for a biopsy until Thursday. I don't think there is any doubt that we're facing a recurrence/metastasis. Now it's just a matter of finding out how much it has spread. We're both really dreading the PET results but I also can't wait to get them. It's an odd feeling to be frustrated at how long it's taking to receive terrible news.
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Not sure if this is an active thread/whether it's worth continuing to post here. However, I figured I would follow through. We received confirmation that my wife's bc has metastasized to her liver and to numerous lymph nodes in her abdomen in chest. The only other concern is that there are some spots on her brain that are too small to diagnose, but they cannot rule out metastases. We're just going to have to follow up with another MRI in a few months to compare. She starts taxol soon. At this point, we're basically just grieving the lives we thought we would live together.
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Batfax, I just wanted you to know that someone was reading your posts. So sorry you & your wife are are going through this. Until your wife gets a plan of treatment, the not knowing is the worst part. My husband & I went through this not long ago. It's very difficult, but has brought us even closer together. Kind thoughts.... GG
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Thanks. Our plan thus far is three month of Taxol (3 weeks on, one off). It looks like we'll be starting next week in order to perhaps participate in a study in which Vitamin D is used to prevent hair loss. After that, we're going to look at hormone therapy, assuming the bc is still ER+. We're still waiting on the pathologist's report on this. We're also going to start genomic sequencing now as it takes a few months to complete.
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Batfax, I'm so sorry you are going through this. I know almost everyone will feel bad for your wife, but it's just as much a toll on you. No one gives my husband any sympathy (except my mother) but he worries about my disease probably more than I do.
I went to a talk once where the speaker said that we all have a vision of what the future will look like. It might be misty, but we have it. When something like this happens, the grieving process is what we use to realign ourselves [or to rebuild a] our new vision of the future. It takes as long as it takes, and that's different for everyone.
It sounds like you're a team. That's the very best kind of relationship.
I hope that Taxol will kick the cancer cells into oblivion. With a little bit of luck the two of you will have many good years left.
Hugs to you and to your wife.
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Batflax, I am so sorry to read of your wife's diagnosis. I'm sure you are both somewhat in a state of shock, numb, all manner of emotions. I hope and pray that the treatment is able to slow down or stop the progression of cancer. You both are in my prayers. Best wishes as you navigate your way through the ups and downs.
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Batfax, I haven't posted on here for a while, but I do still read the comments as they come. Waiting for test results is so hard and I really feel for you. As a caregiver there are days where you just feel so helpless. I hope and pray that the Taxol is a great success for your wife. Know that many people will be think of you and praying for you. All the very best, M.
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My wife was diagnosed in early September with stage IV breast cancer. She has both types ductal and lobular in both breasts that spread to her bones. It has turned our lives upside down in what seems like a blink of an eye. She has now taken tamoxifen for the last month and we will get her second pet scan at the end of December I pray that it shows her to be stable and hold out hope that it may have shrunk it some.
She is my best friend it took me to long to find her in my eyes and we have been together for 15 awesome years and I want more. I am scared of what the future holds. She has been on some sites here and loves the women she talks to feels a very real connection with you all. I am here for her and am willing to do anything that I can to help her. I love her more than any words can express.
To all of you that have been a light in the darkness for her Thank You from the bottom of my heart you have done for her what I can't. I can hold her when she cries or is scared, make sure she is comfortable when she is in pain and make sure she knows I love her but I can't speak to her with the wisdom and care of a person that knows. I want to know if there is anything more I can do for her and be able to get some answers to questions I may have
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Patrick, I'm so sorry for what your wife and you are going through. Yes, the news does turn your life upside down. You and your wife are very new to the diagnosis, and that is a rough place to be. And yes, it can be a scary place to be as well. What helped me and my husband was to stop looking so far ahead into the future and do our best to concentrate on today. It's a gradual change in how you perceive things, but it is a coping mechanism that helps. There is actually a lot of fullness in the course of one day. So, we slow down and try to soak in that fullness. Then the next day, do it again. Take in the big and little moments.
How is your wife feeling? If she is feeling okay physically, perhaps the two of you can find some day trips or activities to do to help distract from the bc diagnosis. Planning and looking forward to things is a big help. Do new things, go new places you've never been before. It makes your mind have to focus on what's in front of you, finding new places, seeing new things, trying new foods, ect. You will never get completely away from the thoughts about bc, but you can continue to move forward and still have good times and good moments.
Just being there for her is the best thing, I think. She is blessed to have that kind of support in her life right now when she needs it most. Best wishes to the both of you.
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To Mrs M
Thank you for you for the message. We have a small get away next month that we thought we would not be able to go on but the kindness of a couple of my good friends we are going. We look forward to the trip as a way to be away from our kids a just be a husband and wife.
I will try and focus on each day it is something that I have always done with her but I have had trouble with it since the DX because of what your told. I love her and know that I am lucky to have her, it's what has made me appreciate every day. Just needed the reminder from you that it's still the same.
Her doctor is really good and we have a team that is only focused on making sure she is relatively pain free, so she is feeling pretty good so far. She just has moments she calls tamoxifen tantrums, they are never angry just sad about having what she has. I think it's a marker of just how good of a person she is that she does not get mad at all of this. She really is my angel she has to be to love me
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PatrickG, welcome. I'm so sorry you and your wife are going through this. It appears you are a team, which is the best thing you can be.
Do not ever feel bad that you need help and support too. People ask me how I am, but they never ask my husband how he is. This affects him just as much.
You two are in what my oncologist calls "the black hole" of diagnosis. With luck she will respond well to Tamoxifen, or if not to that then to the next drug. Life will never be the same, but it can get back to "normal". This will all take time, and in the meantime do all the screaming and crying you like. If you need help, ask for it. We'll be happy to answer questions. There are some men on this thread who have been through this from beginning to end.
It might help to realize that while yes, your wife will likely die of this disease, it won't be today. Or tomorrow. Or even a month from now. There's time.
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pajim
Thank you for responding to my post. It really does feel like a black hole, we have been sucked in and can't get away. I want to scream and cry until I have nothing left. I fell in love with her the moment I met her I can tell you everything about that first moment down to the smallest detail. Since we met we have been through a lot together, her dad passed from cancer so we know how most of this goes. Any experience I may have with this disease cannot prepare me for having to watch my wife go through this. I would do anything to take it away but I can't. It leaves me feeling helpless. All my life I have been a protector but I can't protect her or anyone else from cancer. As childish as it seems i want to be mad at something have something to fight but it's not there. I realize that this will take her at some point and that's what scares me. I just want all the time I can get. We all know we will die someday but to have a clock ticking is how the rest of our lives will be spent, I will just enjoy each of those moments
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PatrickG, I know this sounds trite but it WILL get better. I promise. It won't go away, but as you get used to it life will get better.
You're grieving. It's just like the regular stages of grief. Listen to each other and hang in there.
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thank you it's nice to know I have an ear to use. I love her and we will get used to this.
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I know that this thread does not see as much movement as other areas do but for all who do visit please feel free to post. As you can see from my other messages I am new to this. My wife is a fighter and I love her. I am trying to work out in my head all that is going on and that's hard. But because we are so strong together we can get through anything. We will always be together no matter what happens.
I look to everyone here for support and a way to ask questions for things only you all can answer. I needed a place to be able to vent and get some comfort. I get plenty from my wife but sometimes I don't want to burden her with my feelings because she has so much to deal with. We have always considered ourselves the luckiest people on the planet because we are so close and that makes this so hard. I love her always will no matter what I have realized that we lived moment to moment before and that's how we will go forward.
I love hearing from you all and am here for you as well
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PatrickG - Welcome. May I say your wife is fortunate to have such a loving and caring man by her side. Very sorry for the reasons that bring you. This is all so new to both of you. I can only echo what others have said above. I was diagnosed almost 2 years ago and doing very well. The shock of dx is very hard to absorb and the first months are a roller coaster. Your wife is more than welcome to join the threads, and we will support her the best we can. Wishing her the best with her tx and sending hugs to both of you. Don't hesitate to question, share your feelings, whatever you need.
MfromAus - how are you?
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Patrick, my husband has expressed similar feelings about not being able to protect me from bc. It sucks to feel powerless like that. And yet, some things are beyond our control. It does feel like a free fall at first. Slowly, we felt like we got a bit of a handle on things and moved forward, very slowly, but moved forward. I did things I wanted and not things out of obligation. Our son was graduating high school, so there were activities and parties and I did those things when I felt well enough during chemo treatments. Then getting son ready for college. I moved slowly, so many emotions to deal with. Sometimes just taking a ride on country roads was when me, dh and ds had some of our more memorable times.
I always remember that first year when I felt like a wounded soldier who'd been blown up by a land mine. Things felt so bleak. My husband was sitting across from me in the living room. We werent really even having a conversation, just together in the living room, and he said,"I'm here for you, honey," and you know, that just meant the world to me. That is truly all I needed. Because I have to handle the cancer myself. It's one of those things he can't do for me. So I just accept that. It's okay he can't rescue me from this. He is here for me, and that's what I need.
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LindaE and the DivineMrsM thank you for all you said makes me feel good that the feelings I have are not unique to me. My wife is ChelleG on the threads so you may know her and know how special she is. We will be here for a long time to come, so we will have lots of questions for you all. She is always talking about you all I sometimes look over her shoulder and I feel I know some of you a little. I thank you for all you have done for us and what we will have in the future. I can say I love you all. I pray for you all and hope for the best
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PatrickG - I know ChelleG from the bone mets thread! Wow, it's so nice to know who your wife is. She's a great contribution to the thread (of course we would prefer she had no reasons to be there). It's a great bunch of women on that thread with a lot of support, knowledge, info, compassion and sometimes humour. We take good care of each other.
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Yes you do, she keeps me up to date on all of you. Like I said before you all are the support that I can't give. I do what I can here I make sure she is comfy and happy as best I can. Wish we had no need to be here as well but if we have to be I thank God she has all of you.
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Having a little trouble here. Need some advice with it. A little back story is needed here so here goes. My youngest is having some issues with her fiends at school. With all of the stress and anxiety she has had to deal with surrounding her mom she is finding it very difficult to go everyday. That in turn is worrying my wife and that just adds more to her already full plate. My wife is now saying things like "I wish I would just die so you guys don't have to go through this anymore." That cuts very deep for me I hate seeing her in these dark moods. What can I do or say to help her past these kinds of things beside just holding her and reassuring her that we need her here. She is the center of our universe and loosing her is what we already fear
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To me, that sounds like your family needs some counseling. Is there a minister or reverend that you could speak with to help your family find some answers? Or if your health insurance provides for counseling, please use that resource, for your wife, you, your daughter.
Maybe remind your wife your vows were in sickness and in health, and you are here for the long haul. Tell her just because the going gets tough doesn't mean you're going anywhere. Wishing a quick death is of course not an answer and you should gently tell her that. Let your wife know you will all be taking things just one day at a time. Let your daughter know this is something that you and she will deal with one day at a time, and tell her you and she will get through it. Let your daughter know yes, the situation sucks and it's not fair and of course she feels terrible about it all but it's still also okay to find time to do things that bring her happiness, if they be her hobbies or spending time with her friends away from school.
I wish you all the best.
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Patrick--divine has given you some great advice and imho I second the counseling probably with a LCSW (licensed clinical social worker).
This is a family issue. How old is your youngest? What specific troubles is she having with friends?
I have said the same words your wife said to you, to my husband. I DON'T want to leave, but if would help the family move on and learn to life without me, smile, be happy again. I can't bear the pain I see in my oldest' eyes and my 4 yr old probably would not remember me very much. Which maybe would cut down on her initial grief. It happens all the time--a mother or father dies...the widower moves on and will find love and happiness again. That what I want...in my head...but it rips my heart into two.
And then their is you. From you being on this board seeking advice, coming to vent, coming to gain any insight on how to help your wife and kids is...pretty darn amazing. You are scrambling to figure out how to glue this family back the way it was...it's just not. You are not going to fix this (and by that I men cancer).
One of the best things that happened to me, as the patient, my treatment facility had a social work intern. She is 7 yrs younger. Has a ton of positive energy. Very sweet and soft spoken. She is an old soul. We have become very good friends since we started talking about 2 1/2 years ago. She shared with me at some point along our friendship development that at the age of 15 she alone took care of her mother for brain cancer. Her father pretended everything was fine. Older brother left. For almost a full solid year she took care of her mother. Other teenagers were out doing whatever teenagers do, but she was content to be with her mom. She wanted to care for her mom. Her mom passed away within the year. She buried her mother at 16. She mourned I'm sure. It's a process. But she finished up high school did very well, went on to school, and decided to get her masters in social work. She has gotten married and had a baby this last year. It has to be hard on her not to have her mom there for such life changing events! When I see Candice, I see one of the most incredible people ever. To go from such a tragedy, use her skills to get her to a place where she can work for non-profits, and do meaningful work. Candice gives me hope. Hope that my children will not get stuck in their grief, that they will continue working hard for the things they want in life. How to be a productive part of society. I worry about my kids more than my dh. He will grieve in his non-grieving way. He's young (40) and very good looking, kind, gentle, and will do anything to help someone.
I'm not sure if you have a particular faith, but honestly that is what Candice has used to carry on and I have to. I faulter but al this cancer stuff just flips everything upside down and it's just hard.
There have been families before us in similar situations. How did they deal with it? Did they deal with it at all (seen that happen too). The reality of the situation is that their is a high probability that your wife and I will die from breast cancer. And there will be many, far too many to follow after. Life goes on. Not how we planned. Not at all how we wanted it to go. This cancer thing sucks. Just know that you are doing a great job at trying to juggle everything. We may say some things that hurt or we may say thing the wrong way...say them anyway. Have conversations that you normally would with your daughter.
Sorry I am rambling. Touched a nerve for me too
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Thank you for listening. We have three daughters 25 21 and 13. The youngest is having trouble with her friends just not being there for her. They have excluded her from the group and she does not have her friends now. I have been asked to go to counseling but have refused thinking I don't "need" it and did not think that the girls needed it if I didn't . I will get with them and set up some appointments so we talk to someone that is not "in" our situation. I am sorry that I dredged up bad memories for you but knew you could help.
I try to be strong for everyone and maybe seeing somebody will help. Our palliative care group offers it and I hope they can help us.. My wife is stronger than all of this. We have talked about that train of thought and she knows I need her, here, strong and always. We have a good family and I think that makes it so much harder for us.
Thank you so much for hearing me and giving me your thoughts and suggestions they help. I have said it before but I will say it again thank you
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You are making the right decision. We here are willing to offer support, but it's limited in this format and we don't see the big picture with your daughter and wife's input, ect. Plus we aren't trained professionals.
I think it's normal to feel you can handle this all on your own and you don't need counseling or "help" dealing with this. It was a bit of a blow to my pride when I finally accepted that I needed antianxiety medicine to help me cope. Hadn't ever needed anything like that, soldiered through all life's ups and down and was proud of myself. I faced the fact that this situation was bigger than all the rest, so with the doctor's help I found the right daily medicine that gave me my life back and now I don't even really think about it.
So what I'm getting at is you don't need to deal with this in an isolated way. Reaching out for help is a sign of strength and it's good for your daughter to know you recognize she needs some extra support.
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I know we are not professional here, but you all have insight and knowledge that helps. I find comfort in the advice you all have. I told my wife today that I was going to make the appointments for counseling. Even if all we do is go in and let off some steam by talking about what is going on in our heads it will help.
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Yes, even tho we aren't professionals, there is a tremendous amount of support found on this forum. It's a lifeline to me. I'm glad you are benefitting from it, too.
The other thing that popped into my head is keeping a journal. I've done this on and off for most of my adult life. Right now, I'm reading a book called The Artists Way and it suggests writing three pages every morning of whatever comes to mind. No right or wrong way to do this. (Supposed to unblock creativity). But I have written in journals before as a type of therapy because I read that it can help us clarify our thoughts. I don't write just about feelings, but about anything that comes to mind. Things I need to do, activities I've done, family situations, how cute my cat is, ect. I find that it can be calming.
This is something your daughter could do. It's not meant to be read, it is a private thing. Maybe at her age she could write just a page or two each day. And really, you and your wife could do it, too. I just have a fifty cent notebook and write at least five or six days a week. If you can't get to it in the morning, do it at night. After awhile, I started looking forward to it.
It's great you're taking action and making appointments and I hope that all works out for your family.0 -
Just a note here to bring some reality to the 13 year old's situation - this is the prime age for "mean girls" it can be devastating and the effects can last a lifetime - I have been lucky to have two friends made in Kindergarten who are still with me 66 years later!!! We were separated for middle school but were able to get together on weekends and it was a lifeline even back then. Might I suggest your daughter gets her counseling through her school or at least with someone who is familiar with that mentality - she might want to talk to that person on her own - she's under a lot of pressure right now as I am sure you know - she's certainly been gifted with two wonderful parents - good luck to you all. BTW I had best luck with social workers for counseling.
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