Husbands/Partners of Stage IV Breast Cancer

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

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

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.

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

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

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.

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.

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.

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.

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.

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.

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. 

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.

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.

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.