Frightened and Concerned SO

Anonymous

Hello Eveyone,

I'm new to this message board but I want to start by saying that I've found the caring and support shared on this site to be touching and an invaluable asset in coping with BC.

The love of my life was diagnosed with breast cancer on March 14th of this year (Ironically, two years to the day when she told me she was pregnant with my beautiful daughter) and is fighting the battle and trying to come to terms with what she has ahead of her. She has been spending a lot of time on this site finding support and gathering information so that she can make the best decisions regarding her treatment options and reconstruction. I must admit, going into this I had little or no actual knowledge of BC, so she's been slowly educating me (she's the smart one) so that I can understand what she is going through and also to help me learn how to best support her through this difficult time.

Any advice would be greatly appreciated.

Everyone I've talked to about this, including my Mother and other family members have told me that I have to be strong for her, the truth is...

I'm terrified.

Although I know her prognosis is good and in my heart of hearts I know that she is the strongest, most determined woman I've ever known... there is no way In H@&& she'll let this beat her, sometimes it's so difficult to keep the emotions and the fear inside. I'm deeply saddened by the thought that she has to endure this and truly wish I could take it on in her stead... I try to be strong for her and support her in every way that I know how but I'm so frightened...

the surgery...
the recovery... will there be complications
the treatment... is she physically up to the demands of chemo

and it goes on. don't get me wrong, I'm not a wuss, and I recognize that more than likely, it's my emotions getting the better of me but, it's just that she is everything to me and the thought of her having to go through this is difficult to bare... there have been moments when I've had to leave the room so that our children wouldn't see me and become frightened. Also, I don't want her to see me that way because I don't want her to have to console me when she is the one having to fight this, so I try to keep most of it in, it's just so hard.

I was out of town on a business trip when she called me with the dx and it was ... surreal. My first thought was how I didn't want to have to tell my daughter 3 years from now how wonderful and beautiful her mother was... I was in a cab on the way to the airport and I lost it... the driver must have thought I was nuts.

I know that what I'm feeling is nothing compared to the feelings she is coping with but I guess, after seeing how much this site has helped her... I wanted to tap into the support myself. I want to thank those of you who have and continue to reach out to her on this site and give her words of encouragement and love.

Your work here does make a difference..

AngelsMan

Jeanette39

You also sound like a very special person. I was diagnoised
this bc in January. I have already had my left breast removed and will be starting chemo within the next couple of weeks. They dx me with stage III cancer. I know my husband and I lived the roller coaster ride of emotions for
many, many weeks. We had many tears. But there is two things that we always remember that first God is in control
and two we have to look at each and every day and enjoy.
Not to say that finding out that you have bc is a blessing.
But if at lot you live in the fast paced world of work
and home. You sometimes don't stop long enough to cherish
the ones that mean so much to you. Cherish every moment.
No one knows when there time is up. And bc does not mean
your time is up. My husband and children have been a
wonderful support and it sounds like you are right there
for your loved one also. Positive thinking and prayer
and knowing that God is in control when get us all through
these tuff times.

My prayers are with all of you during the difficult time.
Jeanette

nlk

Angels Man, The love of you life is pretty lucky to have someone so caring. You read about so many husbands or boyfriends who tend to shy away after the diagnosis. My husband sounds alot like you and was extremely upset when I told him my DX. He was with me through my entire BC journey from Bilat mast, chemo and reconstruction, and to be honest with you I could have not made it without him. Having a 3 year-old may be difficult, but it will give her reason to keep on going. With your help and support I'm sure things will be fine. For me it has been 15 months since my DX and to tell you the truth the time has flown by. (Thank goodness)! Your love and support will carry her through this.....honest! Stay strong... NLK

sjoc

Hi AngelsMan - sorry you guys are havung to go through this. Don't think that you can be strong all the time, it's the scariest thing I have evr been through. My husband chose not to show any emotion throughout this whole ordeal. I had a lumpectomy, mastectomy and finished chemo 6 months ago. I wished he had shared his feelimgs with me. I felt very isolated not knowing what was going on with him. I felt as though I was in the battle by myself, and this has put a terrible strain on our marriage. Share your feelings and fears with your wife, you are in this together. Let her know how much you care and ask her how you can help her. Let her cry with you and be mad at the world and just let all her emotions out. It's miserable having to keep them all inside. You need to vent too, hopefully you have someone you can talk to also. When she is in chemo do fun things on her "good" days and pamper her on her "bad" days. Just make sure she knows how much you care.

ramonajane

Hi AngelsMan - I'm so glad you found us, and so glad you decided to post after seeing how much the site helped your partner.

My partner will mark her two-year survival anniversary in June of this year. Its been a long road. One thing we found that helped us greatly was focusing on communication. She said that for her, it was important to know how I was doing just as much as she wanted me to be a safe person who she could share her feelings with.

She said for her, it was important that our relationship balance not tip TOO much. We have a very 'mutual' relationship - caretaking, consoling, listening, and so forth are all done pretty equally from one to the other. Besides the balance of physical caretaking, which of course was tipped, she said it felt better for her to continue sharing our feelings with one another.

Of course, your mileage may vary. But one theme I've heard from so many survivors and their partners is that communication is very important. Finding out how both of you want to handle this will make it easier to move forward.

As far as "being strong", I don't think that all has to be on you. Your relatives who are telling you that have good intentions. But caregiving is a big job that comes laden with all sorts of emotions and challenges - just like the job of the person who is diagnosed.

Keep coming here, keep talking to us, and ask for help when you need it - both in 3D life and here. Again, I'm so glad you found us, but of course so sorry you need to be here.

You can do this.

ramonajane

ramonajane

Quote:

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I'm deeply saddened by the thought that she has to endure this and truly wish I could take it on in her stead...

---

This is one of the hardest things. My partner said she thought in some weird way it was easier to be the one with cancer, because at least she could DO something: surgery, treatment, meds, appointments.

Whereas for the partners, we can drive to all the appointments, wait in the waiting rooms and offices, strip the drains, monitor the meds, call the doctor and so on - but our bodies are not the ones fighting the battle. We can only do so much.

It is very hard because there is nothing concrete we can do (unless we are doctors!).

That is our reality. Its hard, but its not impossible.

We are here for you - keep coming back!

CaliforniaKate

Angelsman, It is very hard to learn you have cancer, and I think just as hard when you find out that someone you love has it. You and your wife are going thru a really rough time now, but it sounds like you are a great, caring husband, and you will be each others strengh. She's really lucky to have you. When I was diagnosed, I knew I had a strong marriage, but I was so suprised at the little things my husband did that really showed how much he cared. Hang in there, it will get easier. Kate

Anonymous

I want to thank you all so much for your kind words and good advice, I will take it all to heart when I'm facing moments of weakness and in question as to how to cope with my feelings of fear.

It seems that the underlying message is to keep the communication channels open with her and let her know how I'm feeling, not in an effort to gain pitty but to show her how important she is to me and how I wish to be by her side throughout each and every phase of this fight.

Thank you again... feeling stronger

Anonymous

Ramonajane -

I almost feel guilty about it but I do see your point. There are concrete things that she can do, and all that I can do is assist in transportation, caring for the house, children and schedules etc... That is a lot but she's the one that's fighting the true fight and I'm on the sidelines supporting her the best I can while I watch her fighting the toughest battle she's ever fought in her entire life.

It is very difficult to feel so completely helpless. Aside from the fact that it is so painfull to see the one I love so deeply have to go through this, that is another reason why I wish I could do this for her.

Thank you so much for your insight.

lightphoto

Angels Man, Take a deep breathe and listen for a moment.

A breast cancer diagnosis IS NOT a death sentence.

OK, now that I have been blunt, I need to encourage you to be as involved as you possibly can. Make it a team attack. It will mean much to your sweety and it will give knowledge to yourself. Allow yourself to grow and learn together by asking questions to your health care team. Take good notes. There always seems to be questions.
It is certainly understandable to be emotional about this stuff....we should be. But my wife and I have determined that we will not just sit back and let this beat us.
Scott

badboob67

Angelsman,
I also agree that you need to keep the communication lines open. My husband is one to keep his "negative" emotions inside. Throughout our journey with BC, there have been times that I have mistaken his self-protection mechanism (stoicism) for lack of caring. Just hearing him say that he is scared sometimes would make me feel less alone. When he avoids the subject, it is harder for me.

I have heard that the book "Breast Cancer Husband" is very good. YOU need support at this time, too. You need a place to let out those feelings that you are having. I'm sure my husband wishes some days that I'd just "get over it" and he didn't have to take up so much of the slack. I'm sure he feels like screaming sometimes. He probably feels like crying, too...maybe he does; I never see it. I am stage IV with BONE METS--found out about the METS the week after my initial diagnosis. I truly believe that this is harder on the people around me than it is on me.

In practical terms, your wife will likely need you to help her by going to appointments with her and taking notes or recording the conversation so you don't miss anything. She will need help with the kids post-surgery (how long and what type will depend on the which surgery she has). If she is on painkillers, it's probably better to have someone else around to help with the small children and she will not be cleared to drive until she is not on painkillers. If she has radiation, she will probably have lots of fatigue. Chemo is not as bad as it used to be. There are lots of new drugs that help with nausea.

Breast Cancer and its treatment can really wreak havoc on personal appearance. For some women, this can be emotionally devastating. Be aware that hostility and misplaced anger can be signs that she is depressed about what this disease is doing to her.

If she takes hormone therapy (to suppress estrogen in estrogen-receptor positive cancers), she can have other symptoms. One thing I have with hormone therapy is forgetfulness that gets very frustrating for me. I am sure that I am hostile out of proportion to the situation sometimes because of the hormone therapy.

Remember that she needs reassurance that the changes she is going through do not affect your feelings for her. Little things like a note saying, "I love you" pasted to the bathroom mirror or bringing home a bouquet of flowers really can mean so much. She needs to feel like a woman, not a patient!

You really can get through this. You won't ever be the same as you were "before", but you can be better and stronger for it.

When you know more about your wife's specific surgery and treatments, please do come back. There are so many women here willing to help!

badboob67

Correction: There are so many women AND MEN (sorry guys!) here willing to help.

Shemp

Funny you mention surreal. That feeling never left me. I only had two really bad days emotionally. One was the diagnosis day, and the second was the radiological day (to see if it had spread to the lymphs) when reality sort of set in and I called my Dad up to confide in him a lot of what the rest of the world didn't see. After that, it became more clinical. I spent a lot of time researching her diagnosis and the different treatments. Spending time just reading how the different chemo drugs work was even helpful. It might just be me, and it may not be the right way, but being emotionally supportive while taking a clinical outlook sure helped me.

CalGal

Hi Angels Man -

Your love, compassion and caring for your spouse really comes through in your posts.

I am also fortunate to have a very loving and supportive DH (dear husband). We were married less than 5 months when I got my dx of bc. I opted for bi-lat mast, SNB (all clear) and rad'tn on one side. I scheduled my rad'tn at 1:00 (worked half-time during that period) and my DH ended up meeting me in the waiting room ... when we walked back to our separate cars, he gave me a rose every time. I just looked forward to seeing him, albeit briefly ... which took away the focus from the rad'tn.

My breast got ultra-sensitive and he was very understanding about that. Fatigue increases gradually ... and we share the "chores", but he really made an effort to do more.

Not to scare you, but I was dx'd with a recurr and mets less than a year after finishing rad'tn - but then I have the BRCA1 mutation. This time, no choice but chemo.

Chemo is much rougher. It sounds like you've read various threads here at bco. While being the "low maintenance type", at least for me, chemo really took a toll on my appearance ... intellectually I knew that losing my hair was a worthwhile price ... but I took it hard ... while I was fortunate to keep my taste-buds and not get sick on chemo; I gained weight ... nothing like a bald head, being my heaviest ever, feeling poorly and suddenly dealing with chemo-pause to interfere with "being in the mood" ... My DH was extremely patient and understanding ... and although I didn't feel it, it was very reassuring that he still thought I was beautiful and told me he'd marry me all over again ...

While he "stayed strong" most of the time ... when he was on the verge of tears, I encouraged it ... You have to release that from time to time ... After the initial dx and then the devastating recurr & mets dx, it worked that one of us was strong when the other had their cry session ...

For our husbands, I think it's really hard on them that they can't do more ... in terms of taking our pain and the terrible choices we have to make ... but I am very thankful for my DH, I could not ask for more ...

Best to you AM, please post with any questions you might have,

CalGal

Anonymous

lightphoto,

Ok.. Deep breath (breath in, breath out)..

You're right, I have to try to prevent this fear and depression from overtaking me and focus on the fact that this is Absolutely beatable and not the end ... the BC dx does not equate to me having to raise my children without her. I have so far, been by her side at every dr appt that my schedule would permit and I will continue to do so, focusing on what I can do to help her through this. Thank you for the advice, I will focus on what I can do and not on what I can't control.

Anonymous

BadBoob67,

Thank you for the book recommendation, I looked it up on Amazon and read the excerpt and it reads superbly. I'm going to place it on order as soon as I'm done writing this post. I particularly like how it described the initial reaction to a BC dx as "acute stress reaction"... how true it is.

The children are going to be a very difficult part of the surgical recovery and treatment. Our 17 month old is going to have a very difficult time emotionally understanding why Mommy can't pick her up for a time. I'll step in but daddy is never as good as Mommy when it comes to consoling or caring for a boo boo. The 8 year old daughter Adore's her and can hardly accept when Mom has a scrape or cut, insisting that Mommy isn't hurt despite the fact that it might be bleeding profusely. She is going to have a real tough time of it, particulary if chemo is part of her treatment plan.

Thank you for the kind and wise words. It is deeply appreciated.

Anonymous

All -

I guess I should be fair and give some details of my SO's dx. She's 42 and has a grade 3 IDC in her left breast (stage is unknown, doc estimates stage 1 or 2). It's approx 1.5 cm and HR+ PR+. As I said in my first posting, she was diagnosed on 3/14/2007 and is scheduled for a bilateral mastectomy this Thursday 3/29/2007 so, as you can imagine the emotions are running high in the house. It all seems to be moving so fast!

A month ago, she was weaning our daughter from breast milk and trying to find a bra that would fit her comfortably, and now this. She's a real champ though, thanks to the kind support that she's received here and from family, she's coping well but I fear that after Thursday is when she's going to crash emotionally.

I know for a fact that she's so fearful that I will not find her attractive after the surgery this week, and the potential body changes from chemo down the road. I want her to know ... no, more than "know", I want her to Feel how deeply I Love Her, despite the changes, and nothing will take away our closeness and what she means to me.

Not to be too personal but (don't tell her I told you this lol) not long ago after making love, she began crying. It was partly out of stress I'm certain and I encouraged her to let it out but she expressed that it was greatly in part of her fear that what we feel during those times of closeness would be lost. That I would pull away from her because of what is happening and how it will change her appearance. I try to reassure her that could Never happen and my feelings for her are far more powerful than cancer and chemo put together; I fear that my words fall short.

I will take your advise and keep communicating and try my best to continue to express my feeling for her evey chance I can.

Thank you all again for your words of wisdom and support.

badboob67

Oh, bless you, Angelsman! Your wife is so lucky to have you!

Since she is having bilat mast, I thought I would let you know a little about the specifics post-surgery. (I do not have implant/expander, so am only speaking for the mast part). You (and she) will probably be shocked at just how little physical pain there is. Much of what she feels will be numbness. Some will go away over time and some will be permanent. She will come home with pain meds; it is best to take them on schedule for the first few days to stay ahead of any pain she may have. One side effect that I don't think is talked about from the pain meds is hostility. My husband could always tell when we were about 20 minutes out from the next dose because I'd have on my "grumpy voice" and be prone to snapping at people for no real reason. This could be hard for the kids...is there a chance they could stay with family or friends for a few days during your wife's recovery? It might be scary for them to have mommy acting differently--even moreso than worrying about how she feels. As far as your 8 year old's reactions to mommy's injuries, she is not likely to notice much unless specifically shown. Mom will have drains attached to the surgical site. My son was 9 last year when I had my mast--and really "mama's baby"--and expressed interest in knowing what was going on. He first asked to see my drains, then changed his mind. I think that if you approach this with openness and let the 8 year old know that she can ask about anything, it will help a lot. These things can be so mysterious and therefore more distressing because of the unknown.

The drains are something that you can actively help with. My husband kept track of the level of fluid collection and helped me maneuver with the drains. They will show you what to do at the hospital as far as emptying them. I was sent home with an AMOENA mastectomy camisole that has little velcro pockets in it to hold the drains. The drains can also be pinned to a blouse/nightgown. Your wife will be able to shower on her own as soon as she feels ready (my husband stayed in the room just in case, though!). I found that I could tie the strap from my bathrobe around my waist and pin the drains to it while in the shower.

About your personal comment, your wife is likely already beginning the mourning process for her breasts. So much of how we identify ourselves as women can be tied to our breasts--sexual attractiveness, motherhood, etc. It is a very personal and individual thing for each of us. I did not want to look under the bandages at the hospital and didn't. One nurse practically yelled at me that I HAD to look. Well, of course I HAD to look...I just felt it was a very personal thing and wanted to be at home alone with my husband when I did so. He was very supportive; I had a good cry and, thankfully, haven't really looked back too many times. Try to be aware of your wife's feelings about seeing her scars and honor her wishes about when and how she wants to first see them.

Lifting the little ones will definitely be a problem post-surgery. There are restrictions on the amount of weight than she can life and if she has any lymph nodes removed, she will find it hard to lift her arms. Just after surgery, I couldn't even open a twist-top bottle of soda! It's very hard to reason with a 17 month-old; I would be careful to make sure someone is always in the room to hold the little one when mom's first at home. The 8 year old can understand that mom needs to be treated gently. I would be careful about referring to mom's condition as "ouchies" or "boo boos" because the bandages can make it look like a very big and very scary "boo boo" to an 8 year old! "Incision" is a less scary word.

I will be keeping your family in my prayers.

Anonymous

Hello everyone,

I wanted to update you on my Sweet Angels progress. She had her bilateral mast. on Thursday (3/29) and she did wonderfully, better than I did and all that I had to do was wait. She's such a trooper. Although it was extremely emotional, the clinical outcome was very positive. They took both breasts and the sentinal lymphnode in her left breast and found NO cancer cells!!! What good news. Of course we're still awaiting the final report, it's looking good.

Now she's upstairs getting some much needed sleep and rest. I've been caring for her drains and can see the fluid measurements get less and less with each treatment. If she continues to progress as she has been, it's conceivable that they could be removed in just a few more days!

I'm feeling much stronger and more positive with each passing day, I want to thank you all so so very much for your love and support through this. I know that she has a long road ahead of her... we both do, but I'm feeling more in control and feeling that I'm being helpful to her.

Neither one of us have seen the scars yet so that is my primary source of anxiety at this point. I want her to see them when she's ready and I want to be there with her when she does... I expect that it will be soon. Her surgical nurse told her that she could shower when she feel ready and to let it happen naturally. So when she showers for the first time seems to be the most natural and logical way to do it. I'll keep you posted..

Thank you all again.

P.S.
I'm not sure if I read it on this thread or not but another SO said that he started a blog to help him work through feelings and help with his therapy and coping... I took the advise and have started an entire site (I'm a software developer by trade) with a blog. It also is a Very usefull tool to help keep family and friends informed and up to date with her progress without them feeling that they are being bothersome and calling frequently. They know they can call if they wish but if they want to see how she's doing, they can go to the site and read about it (I update it daily) and not feel like they are intruding... Very theraputic for me and helps her feel more in touch with those she holds most dear. I Highly recommend it to other SO's out there.

Karl

ramonajane

Hi Karl! I'm so glad you updated, and glad to hear that the preliminary path reports look favorable. Waiting is hard isn't it?

Good job on being the keeper of the drains! My partner had two - we called them Thing One and Thing Two and it was cause for great celebration when they were removed.

I'm glad you find blogging helpful. We had a Caring Bridge site during the acute part of skipper's treatment, and it was helpful for the reasons you described. It was great to allow people to check in as they wished, and then when they phoned we could talk about other things instead of me or her having to repeat the same information 5x in a row.

I hope the coming days have some happy moments, and that the first viewing of the incisions is not too hard.

You're in my thoughts. You can do this.

ramonajane

badboob67

Angelsman,
What good news! I'm so glad the surgery and pathology went well and your wife is recovering well!

You made an excellent point about the blog/website. When I was first diagnosed, I started a blog online at http://www.thepatientpartnerproject.org/ You can post private updates and invite visitors by sending them an email. It was so helpful to me. My mom found it a blessing as well because she had to field so many calls about me. She liked being able to refer people to the website for updates. The website sends out an email to everyone that has subscribed to your blog whenever you update. No one can see your posts unless you authorize them. It is free but was worth a million!

As cumbersome and uncomfortable those drains are (I wanted mine out IMMEDIATELY!), try not to be too enthusiastic and rush their removal. It is better to leave them in longer to avoid complications. I was worried that it would really hurt having them taken out. It really wasn't that bad at all. It is very quick and the pain/discomfort is fleeting. Then, NO MORE DRAINS and it feels so much better!

My prayers to you and your family that your wife's recovery continues to progress well.

Anonymous

Wow ... It's been a very long time since I've posted anything on the site so, here I am.

I want to start by thanking all of you for the incredible outpouring of love and support, you guys are Great!

Here's an update. It's been three months since Charlene's blm and she's doing very well. After much (I mean much lol) research and soul searching, She has opted out of chemotherapy and is taking tamoxifen. She seems to be handling the treatment well but is having to endure some SE's such as pain in her knees and feet as well as exacerbated chronic pain symptoms and neuropothy in her right arm and shoulder. she's now taking some medication to help counter the pain and they seem to be providing her with some relief.

My thoughts are with all of you. Thank You again

Karl

iodine

Hey, Karl, Tamox is a tough drug. My heart goes out to her and you. Thanks for the update.
I found some relief starting out in a warm swimming pool, just slowly working out with a trainer and progressing as we could. I'm now doing laps and strength training. It has been an amazing difference in my joints and muscles.
It took several months, but has made a huge difference.
Just a thought.