Husbands/Partners of Stage IV Breast Cancer
I'm not entirely sure how to start; I don't post, I don't do Facebook and I have no idea how to go about this.
My wife just went through her 2nd round of chemo for her2+ stage 4 breast cancer that also shows in her liver. She's 34. She's as diagnosed maybe 8 weeks ago
Question is: where is the forum for the husbands? I need to be there 100% for her but need help balancing this "strength" and (I guess what I'd call) denial. I also need help knowing what to do, what to expect and how to be there for her.
Any thoughts? Thank you
Comments
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RoyL, you've come to the right place, although we're sorry that you've had to join the community. The boards can be a little quieter on the weekends, but go ahead and ask your questions to hear from others (both patients and caregivers/family members).
Other resources for you: the main Breastcancer.org site, which has thousands of pages of information, and a thread within the Stage IV forum for those who are NOT Stage IV, but have questions.
• The Mods
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RoyL - sorry that you and your wife are facing this disease and join this community. But these boards are a lifeline. There are a few husbands that post on different threads. You might post on a Stage IV thread. Colt45 posted directly on threads that pertained to his wife's dx, tx, and situation. Many dh&ds do! If you are a reader, The Breast Cancer Husband is a great book for both to read...gave words to our questions and concerns.
Will be in your pocket and you 2 will be in my thoughts and prayers.
(((Hugs)))
Cindy
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RoyL you might find the relationships, emotional crises thread helpful too as it is important you get support for you too......
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Welcome Roy. I must say it sucks to be here....but then you've already figured that out.
This and the next forum on the list are for us husband's (and wives of the guys with breast cancer). I do post on other threads when it seems right.
I don't know the right answer to any of the other questions. It seems the right answers change from moment to moment and person to person. For me, I follow my heart, do my best and, if I screw up, I apologize... and I keep trudging along.
It is easy to confuse "doing things" with being there. Some things do need to be done, but don't get so busy doing things that you are physically there and mentally/emotionally a million miles away.
My wife is the most beautiful, strong, funny, amazing, fascinating and perfect woman in the world....and I want to spend forever with her. I regularly let her know that.
You will find out your true friends. In my case, their numbers are few, but their support is huge. I've said it before...friends are family by choice.
Eric
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Hi Guys,
I am sorry that you find yourselves here. I too have just found out my wife has bone mets and I am devastated.
I am glad I found this thread but will add more later.
J
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Hi RoyL, My wife was diagnosed 3 years ago October 7th. It's in her liver, brain and bones although thank God the first thing I did was bring her to Sloan Kettering and they have stayed ahead of it. The way things have gotten to be now is that my wife can't be safely left alone. Not because of advanced cancer but because of the effects of Chemo and pain medication. In the beginning she handled making her own appointments and keeping track of her medications very well, as well as everything else she had always done so well in the house. Then gradually it became evident that she was taking too much pain medication and so that led me to fear that she wasn't handling the Chemo administration correctly either. Now suddenly, and it's not sudden but I say suddenly because it sneaks up on you, I'm all alone doing everything that I don't really know how to do and certainly can't handle. Our 13 y/o with ADHD by himself is a full time job. Psychologists and counselors can only do so much. I wish someone could tell me what to expect from here on in.0 -
Oh, Joseph, we are so very sorry for what you are going through. Do you have a support network? Family or friends who can help out with your 13 y/o or your wife? Does your child have support in school, and are the counselors aware of what is going on? We are thinking of you, and sorry for what you are enduring.
There is also another Topic The Husbands Corner(for family, friends, boyfriends, ect.) that you may post into for support. It is not easy being a carer for one, let alone two.
Wishing your wife, son and you the best.
The Mods
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As a fellow hubby, Hi RoyL, Joseph and Her2husband, even though I'm sure you wish you never had to be here.
I'm sure you'll find support from the ladies here and the few husbands. We know some of what you are going through but you certainly are having a tough time of it (my wife is not Stage IV). I can but wish you the best, and hope things improve.
The stresses that the carers go through, along with life adjustments cannot be downplayed. Your wife and son are very lucky to have such a caring guy around to assume all the required roles.
I don't usually post in Stage IV area, but just wanted to say G'day and you are not alone here on this forum.
My thoughts are with you and your family
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John has support both at school and through a private psychologist. Everyone at school knows what is going on. He doesn't show his emotion and he tries to help but even at 13 he has to be constantly told to do everything like homework, personal hygiene, and when to go to bed. I have no family nearby and my wife's family members call once in a while and say she's in their prayers but that's it. We're not religious so that's not much help as you might imagine. She has a twin brother about an hour away who for a while was describing her as a drug addict until we force fed him some additional information. He visits us and has taken John for a day or two a couple of times, but I don't expect him to be of any real value when the chips are down. My wife says he took his family and went to Aruba when their mother was dying of lung cancer 19 years ago, leaving her to do everything. What is going on here is kind of strange. Sometimes Roberta is okay and sometimes she's so tired she can't do anything. I confiscated all the Xanax and pain meds so it's not that, although that was indeed the problem for a while. Sometimes after an hour's rest she's awake and lucid for a few hours. Other times she won't be able to stay awake for a minute even after a full night's sleep of up to 10 or more hours. The radiation severely effected her short term memory and it frustrates her terribly. She recently had ten straight days of radiation for a lesion in her groin, and when that popped up I really thought she was going to be immobile and I would be in real trouble. However the radiation seems to have worked and she was back on her feet pretty quickly, but she is still in a lot of pain. I can't even imagine how hard it must be.
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Roy and Joseph,
So sorry that Life has put this in your paths...
As far as what will come next, and then after that -- every woman is different, and every cancer is unique. Stage 4 sounds so scary, but can mean many things. Don't believe any predictions of time, as no one really knows, and everyone is unique... sometimes shorter time can even be a blessing.
Your job is just to do the best you can to help your wives, children, and YOURSELF stay as calm and as positive as possible. Try to keep a gentle sense of humor, and stop often to appreciate the best moments... make an effort to spend quiet time together, and don't forget to take quick moments of peaceful rest for yourself....
For us it was outdoors -- a quiet walk and then sitting in the sun to watch the fall leaves rustle in the trees -- it is amazing what sorts of incredibly deep conversations can arise from these quiet moments.
If you can manage it and her health is stable, maybe you could plan a long weekend (or vacation) to go somewhere she has always wanted -- and don't expect to do much -- just relax together. Maybe just take a drive, have a picnic on a blanket in the grass -- take pillows and blanket and have a nap in the sun. Take her out in the back yard and hold her in your arms as you both look up at the stars... Notice the full moon and tell her it belongs to the two of you -- that forever when you see it you will think of her... Buy her some pretty earrings or a bracelet and give it to her right before her next treatment/surgery -- tell her the jewelry is so she will "feel beautiful in the hospital" -- My new husband said just that when he gave me earrings the day before my double mastectomy 2 years ago... and he asked me to marry him when we got my first clean bill of health last fall... the timing of these romantic gestures were SO powerful for me... I am tearing up just remembering how potent the love felt in those moments... You can give your wives those same sorts of gifts-of-love.
It may sound odd, but these days ahead are a wonderful opportunity to become closer to your wives than you have ever been before. An opportunity to share the incredible experience ahead and to demonstrate your strength and love in amazing new ways. Hold her hand. Rub her feet. Spoon her at night. Open your heart as fully and consciously imagine connecting your soul to hers. Then, no matter what happens, you always have that to fall back on -- the magic of a connection so deep that most people will never be blessed to know.
There is no such thing as "fair" -- so we just have to make the best of it and look for the silver linings. Drastic change brings with it a blossoming of the soul -- it is only "difficult" if we choose to see it that way.
I was my dear father's caretaker through his stage 4 brain tumor. I was his caretaker through a year of chemo/radiation and other treatments -- and then lived the last 6 weeks of his life with him in Hospice.
It changed my life in extremely powerful (and positive) ways -- The honor of helping someone through this passing is something impossible to describe. Yes, there are painful and sometimes difficult moments --- but there is incredible beauty, too. When Dad passed, we were closer than we had ever been before. It may sound strange, but I still feel his influence and his presence -- every time I think of him -- every time I welcome him to take a nature walk with me or enjoy the gorgeous sunset -- I feel him there... there is an extra sparkle in the sunshine.
I still have conversation with him.
A real connection does not have to end... for the rest of your life you will have her with you in your heart and mind.
So foster all the love you have for her now... and say all the things to express your appreciation for all the time you have shared and whatever time is left. Vow to make every second count. Bask in each other's love... take it to the next level and connect as fully as you possibly can. It will make everything so much easier for you both to know you will always be connected by your love, no matter what comes.
One more thing -- when my dear father was dying... my last lucid conversation with him, we joked that I had never had much luck with finding a good mate.... and I asked Dad that if he was bored when he got to Heaven, could he maybe pull some Heavenly strings and send a good man my way? That afternoon, Dad slipped into a coma. I like to think it was because he couldn't wait to start working on the challenge of sending my husband to me. That very afternoon, Les showed up in my E-Harmony mailbox, and I love to think that my Dad sent him to me. Dad taught Boy Scouts for 50 years... and I was his tomboy -- his hiking and canoeing buddy. Now I (almost magically) live on a large ranch in the mountains, surrounded by elk, bears, deer, antelope, cougars and bobcats... a life I never would have dreamed possible, with the sweetest/kindest husband (who is a wildlife biologist).
I see Dad's Heavenly fingerprints all over this.
I am telling you this because of the joy it gives me to still "have Dad in my life". Every windfall of cash, I see it as a gift from Pop. My mom lamented how sad it was that Dad and Les (my husband) never met -- that Dad couldn't have walked me down the aisle this summer... and I just laughed -- told her that it was Dad who picked Les out and sent him to me... and that of course Dad walked me down the aisle...
Both you, your children, and your wives might be able to benefit from this idea -- that our loved ones stay with us forever and continue to send their love and guidance... that even "from the other side" your wives may have the power to help and guide the ones she loves... At the least it can't hurt, and at the best, you will rejoice in "seeing your wife's Heavenly fingerprints" all over your future successes...
You have the opportunity through this journey to grow in ways you could never have guessed, and become stronger, more peaceful men.
All my best,
Linda
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I've never posted on a forum before, but feel so lost at the moment.
My wife was diagnosed with breast cancer 5 1/2 years ago at age 39, had a lumpectomy followed the next day by a mastectomy. The test results showed it was a estrogen receptor positive grade 3 (aggressive) tumor, but lymph nodes were clear. The treatment protocol at that stage was chemo and Tamoxifen.
12 months later my wife had a preventative mastectomy to remove the potential of the other side.
2 years ago the lymph nodes in her shoulder became large and following surgery it was found the cancer had spread. This was followed by radiation therapy and a change in medication. Then nearly one year ago the cancer was found in her spine. Another change of meds, this time to Zoladex and Arimidex with more radiation, but as her markers continued to climb she decided in August to stop all mainstream treatment and go with stuff she has read online.
Since then she has become quite weak, has a swollen abdomen and is in a lot of pain. Some days she says that myself and our children would be better off without her. Other days she still talks about beating the disease. She doesn't want to see a doctor so I have no idea what is going on and whenever I read information of what could be causing the symptoms is scares me.
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I am stage IV and have had BC for six and a half years (last two years as Stage IV) - I think you need to find a way to get your wife to a doctor - it seems like she might have ascites and the pain can be relieved by draining - also there are other meds to try - do you have a social worker at the cancer clinic or hospital where she was treated - can you make an appointment for yourself to go and see this person - also what "things" is she trying that she's purchasing online - no wonder she feels so terrible and hopeless - perhaps an anti-axiety drug would help her mindset (perhaps you need to get a prescription for one for yourself) - so frustrating for you and the family - sending good wishes for you and your family.
Just one last thought, is there anyway you can get a doctor to make a housecalls - some oncs. make them when things are dire.
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MfromAus-
We wanted to welcome you to the Breastcancer.org community, and tell you how sorry we are that your family is going through this. Is there any way at all you can get her to see a doctor? Do you have other family that could help convince her? Even if she chooses to eschew traditional treatments and continue on with alternative medicine, a doctor may be able to find out the cause of her pain and get her some relief. Echoing 208sandy, do you have access to any social services that may be able to intervene and try to get her to a doctor? And perhaps offer you some support, as taking this all on while trying to also take care of your family can't be easy. Please keep us posted, you're all in our thoughts.
The Mods
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Thanks for the kind words. I don't believe that there is any possibility of my wife going to a doctor unless the pain medication she has can't control the pain anymore. By then I'm worried it will be too late.
The course my wife is now following is based around gut health, probiotics, suppliments, detox etc. I am certain that having a healthy lifestyle and diet is important but I can't find any credible evidence that it can slow progress let alone cure cancer. My wife has never smoked, only drank socially when younger and has always remained active.
Unfortunately any drug, even pain killers, is seen by my wife as poison so I am not brave enough to even suggest anti anxiety meds. I completely support my wife and love her unconditionally with the choices that she makes. But when I get time to myself, my mind wanders into that dark place in the future.
As far as other support goes, my parents have now moved in with us and can help with some day to day activities like dropping of and picking up the kids from school, but at the moment my wife feels that asking for any other help is admitting defeat and giving up.
I just feel that a small part of me dies every day, and I'm permanently in a roller coaster of emotion. I have no doubt that everyone on this forum has had the same feeling of helplessness.
I must say it is slightly therapeutic just to be able to let out some of my feelings.
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The trouble is that even the healthiest of us can and do get bc and as far as anyone knows there is no alternative cure for cancer - if there was we'd all be on it and cured. If you can't get your wife on anti-anxiety meds can you get on them? They'll make a world of difference for you - I'm glad you come here for support and you're right, it does make one feel better when they can let out their feelings. Glad your parents are there for support with the children and the day to day activities of running a household - keep posting - we're here to listen. S.
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MfromAus, I'm so sorry you are going through this.
As a patient I cannot imagine how my husband feels. He worries more about each scan than I do, he panics if I stumble (had back surgery last year), wants to create the best possible experiences for me while I am still healthy.
You need to take care of yourself (and your children) as well as taking care of your wife. And yes, you need to look into and plan for the future. See more than the black hole you currently see. It's going to be hard. Harder than it is today? I don't know. You're likely so "in the moment" right now that it's difficult to think ahead.
I went to a lecture recently where a psychiatrist talked about coping. He said that we all have a view of our future. When disaster strikes, that view is gone or radically changes. "Coping" is the process by which we build a new vision of our future.
It sounds like your wife is in a lot of pain. It doesn't need to be this way. That's why God (and scientists) created pain medication. It's also likely the reason she talks of your being better off without her. Except in very rare situations, it isn't possible to "beat" this disease, only to live well with it. I think Linda's post (above yours) might help you.
On behalf of Stage IV ladies everywhere I'd like to thank you for being so supportive of your wife. Many men can't manage this. Many hugs to you and your children.
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208sandy and pajim thankyou so much for your kind words. There are so many different emotions that occur every day it's hard to know what to do or say.
One moment it's tears and everything negative, an hour later it's talk of a cure.
I wish that there was something I could say that I knew would be the right thing, but there always seems to be a changing emotion.
I will keep posting as things change. On Monday I start seeing a councillor to work through what's happening.
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MfromAus - glad you're going to see someone on Monday - I know that the social workers at the cancer centres have helped many through tough and very frustrating times. I am hopeful that your dear wife will soon accept some help from a doctor (any doctor) and at least get something to ease her emotional pain. Keeping you and your family in my thoughts this weekend. S.
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Hard to believe but it feels like things are going from bad to worse.
Over the weekend my wife and I went out to do some shopping, she struggles to walk at even a slow pace and gets so tired, and now she has started to cough up green phlegm and has a greenish discharge from her right eye. I pleaded with her to see a doctor but got the responce that she'll wait 3 or 4 days.
Has anyone seen or heard of anything like this? I don't know what to do, I can't force her to see someone, but when she is weeping and saying she would be better off dead it breaks my heart......
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Sounds like you wife has an upper respiratory infection - she NEEDS to see a doctor and get some anti-biotics - she may, in fact, have pneumonia - you may have to force her by calling an ambulance and taking her to Emerg - things can turn bad very quickly. Glad you're seeing counselor tomorrow (today) - talk to that person about this and keep in touch.
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I went and spoke to a councilor yesterday, not easy, I'm not good at asking for help. The person I spoke to has spent a lot of time working in palliative care and said the symptoms my wife has are common for someone whose immune system is shutting down.
On a slight upside we are going to see a doctor this afternoon, at the moment purely for pain relief, but the conversation last night was not completely negative to seeing the oncologist again to maybe have radiotherapy for pain control. This will require another set of scans, but at least we will have some idea of what we are facing. I've got a horrible feeling that this is a 2 edged sword.
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Glad to hear that a Drs. visit is happening - even if only for pain relief. I am hopeful that an oncology visit might be in the cards too - at the very least your wife will be much more comfortable and that's so important for all of you.
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I hope that I don't seem to be rambling.
Yesterday we went to see a doctor, we now have Targen & Endone for pain relief. The alternative person she is seeing wanted to know what her blood results show, so later this morning she will have blood taken and results will be back tomorrow afternoon.
She has told me that no matter what the results show the person she is seeing can help reverse the damage with ozone therapy and intravenous vitamin C. Every part of me wants to believe that there is some hidden secret, but all my life I have been a scientific person and see nothing but more pain and disappointment coming.
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Dear M,
I can't tell you how sympathetic I feel toward your plight. I hope that your wife's medical decisions turn out better than you fear (with which I concur, by the way). Perhaps we can hope for a placebo benefit? Please keep posting and I'll keep watching this thread.
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Well, at least she's got pain meds now and that must be some relief - as for the vitamin c, etc. honestly if it worked we'd all be on it but if it keeps her calm in the short term then so be it - we're here when you need us and no you weren't rambling.
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I guess my wife isn't alone at trying to hide the true extent of her pain. Today she asked me to make an appointment with her oncologist to see if palliative radiation therapy could ease some of her back pain. So on Monday we will make the trip, no doubt filled with dread, to see the oncologist.
I'm really not sure how to feel. Part of me is desperate to know what's going on, but part of me is terrified, and knowing that she will not have chemo or hormone meds makes knowing the truth a lot more concerning.
I will update on Thursday when bloods are back. If radiotherapy is possible, a full body scan will need to be done, so at that stage we will have a clear picture of where we are at.
Thanks for your support, I don't really have anywhere else to turn.
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Your poor wife - she must be having pretty severe pain for her to want to see the onc. I am hopeful the radiation will ease some of her pain - perhaps while she is at the oncs. he/she will be able to convince her to perhaps have some chemo. Try not to worry yourself to death (easy for me to say) while you're waiting for results - all we ever have is today and you need to stay in the moment - are you able to see the counselor again before Monday? Can you see your own dr. and ask for anti-anxiety meds to see you through this rough patch - they have worked miracles for many of us and our supporters. Take care, S.
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208sandy, thanks for the kind words.
I got a phone call this morning from the doctor saying that the blood test results were back and I needed to get my wife to the hospital as soon as possible. Her blood calcium levels are so high that it's causing damage to her organs.
So I write this sitting in an oncology ward, waiting to find out what next.
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Her2Husband, Joe and M
I'm here and listening also.
Eric
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M - just saw this - so glad she's finally in the hospital now perhaps they can get her pain under control and do some treatment - how are you holding up - I'll be online most of the day and will check back to see how things are going - sending hugs to you both. S.
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