Dis Breast Cancer Survivors - GAGWTA!

[disneylizzy]

Hi Laurajean, my kids were 7, 10, 14 and 15. We told them before I had the surgery. I did not cry (thru some miracle of God) and I remember explaining that the chemo was medicine that would make Mom sicker before she got better. We also said that it was such powerful medicine that it could kill healthy cells as well as the cancer cells and that was why my hair would fall out. They never asked many questions even later on. I think kids live in the here and now so much that as long as their daily lives are not disrupted, they can be ok and deal with things.

The hot flashes, for me, were the most annoying side effect of tamoxifen. I always dressed in layers so I could whip the top layer off quickly and I stopped wearing turtlenecks altogether. I would keep mail on my desk so I could get up and run out to the mailbox across the street, this was most effective in the middle of winter without a coat.

 

[LoveWDW]

LauraJean, I am very sorry for what you are going through, feeling unsupported by your husband. I could be wrong, but I suspect the thought is so extremely painful to him that he hopes to blunt the pain by saying it out loud. It is not what he should be doing, but maybe he can't help himself.

Thanks, Pop Daddy!

Amy, hang in there girl. You can come through this. You are a strong lady, and you have this site of buddies to talk with.

((Hugs)) to Pea-n-Me.

 

[Laurajean1014]

Day 4 of the "Ferris War." No one is speaking to the other and my husband takes my son to places and comes home late. He will no longer speak to me.


Kelly - Give us a report on how you are doing.

 

[Laurajean1014]

I suspect the thought is so extremely painful to him that he hopes to blunt the pain by saying it out loud. It is not what he should be doing, but maybe he can't help himself.

LoveWDW, you maybe right. However, if that's the case, he is a weak person. I am truly ashamed of that.

 

[LoveWDW]

Oh, Laurajean! This is so sad! Would he consent to marriage counseling?

 

[Amy]

Oh laurajean, I feel so bad for you! Right when you need him the most, your DH is abandoning you. I wish I knew what to say to comfort you, but I'm at a loss. Maybe your DH needs to work some things thru in his head before he can be there for you, who knows?? Try to take care of yourself, and come here for support. Hang in there, kiddo!

 

[Laurajean1014]

When he apologized the day he said it (when he followed me in my car), he promised to go to counceling. However, he hasn't mentioned (that or anything else) afterwards.

I'm not too worried. I have friends and will get through this with their help and w/o his.

Thank you so much for your thoughts. I am a very strong person and will overcome these two speedbumps.

 

[ElenitaB]

Laurajean, I'm so sorry that you have the complication of your DH just when you need strong, positive people around you. I'm glad that you have a network of people locally who you can turn to.

As for telling the kids... my DS was 5 and just finishing kindergarten when I was first diagnosed. I checked out the books that were available at that time and they were inappropriate (i.e., too technical) for his age group. I made up a story about "bad buggies" who the doctors took out of me (I did have staples from my upper abdomen all the way down to...), and that I was going to have to take "strong medicine" that would make me tired and make my hair fall out. I was worried that if he got sick with the normal kid things (ear infections, strep, etc.) that he wouldn't go near the antibiotics as it might make his hair fall out. It worked really well and "bad buggies" became our code word for cancer. I didn't want to use the "c word" because there was a child in his afterschool program whose dad had died of lung cancer when he was only 3. Unfortunately, this child had emotional issues (poor thing) and was quite the bully. I strongly suspected that if my DS said that I had cancer, that this boy would definitely tell him that I was going to die as well. So "bad buggies" it was...

I told him about the possibility of a relapse the same day I found out. His reaction was quite appropriate for a 9 year old ("Mom, are you going to be bald again? That's gross.") I did breathe a sigh of relief. He's doing well... worried, of course, but since I set the pace of hope and fighting this bugger, he feels fairly centered as well.

 

[disneylizzy]

Laurajean - I think tough times show what people are really made of. Unfortunately, dealing with cancer and every other responsibility that you had before you were diagnosed doesn't leave a whole lot of time left over for helping your DH deal with his issues. (Geez - who is the one that has to have chemo, after all?!) You need unconditional support right now and I am so sorry that you have to go thru this.

 

[NHAnn]

Laurajean ~ what to tell my DD, who is almost 19, was not as much of an issue as when to tell her. She was finishing up her freshman year of college and heading into finals the week of my biopsy and I didn't want to distract/upset her. It all worked out OK for us. I still worry about her this summer....she does not want to think about it or talk about it, and though she has been thoughtful and helpful and spent a good deal of time with us....I've also seen some out-of-character type behaviors, stuff I thought we'd seen the end of at 15 or 16. Not sure if this is totally unexpected, being back from her first year of "freedom" though
I still feel so sad about your DH's reaction. Would he read the Silver article Elinita linked to, if you printed it out for him? It does sound like he is so angry and scared for himself that he can't get past that to support you. Does your hospital have any resources for helping the family cope with diagnosis? If he agreed to "counseling" maybe he'd attend something with you or himself, and it would help get things on a better track? Hang in there I am going to be on either Tamoxifen or Arimidex (as part of a Clinical Trial), when I finish radiation in a few weeks. Do you already have the results of being Estrogen Postive? I didn't get that test result until a week or two after getting the initial pathology report showing the DCIS. If you don't have the result, don't even "go there" yet. Anyway, there are lots of potential side effects of hormone therapy....most common being hot flashes I guess. There's some good (and easy reading) info on Breastcancer.org


Hope all you ladies had a good weekend

 

[MinnieM3]

Laurajean....so sorry for what you are going through. I can't believe your DH said such a thing. Argh! Everyone does handle this differently, though. I'm sure it will get better! Goood for you for keeping a strong attitude.

My kids were 4, 14, and 17 at my disgnosis and all had just started school....4K, freshman in high school, and freshman in college. Told them all separately. 4K is into video games and told him Mommy had a "bad boss" like in Mario that the doc. had to take out, etc. 14Year old was quiet, he usually is and had a few questions. Worst was having to call m DD at college. She pretty much fell apart. Then she really went into denial.

It all is so hard. God bless all of you here and keep up the good spirits!!

 

[Disney Debbie]

Hi all - just got back from a "quickie" trip to WDW with my mom and my brother and his family. Had a great time!

Laurajean - I'm so sorry about your DH's attitude. If he has agreed to counseling - just make the appt. and tell him when it is. He'll not make the appt. himself or bring it up again so don't wait on him. But DO make it! My DH was very supportive but when I was first diagnosed I was totally unwilling to discuss any of the down side. I wanted nothing but positive thoughts and no discussion of "what if's". I wasn't in denial - but that's just my way of dealing with things at first - then later I had a few of the what if thoughts. Anyway - DH was scared to death and needed to talk about it - but I wouldn't let him talk to me. We have very dear friends who are surrogate parents to us and the husband is a Prostate Cancer survivor. So DH went over to their house one night and talked with them and got all his fears out. We're an odd couple - when it comes to dealing with things like this I have more of the typical male reaction - "What do we need to do to fix this" and he's usually more of the female reaction - "Let's discuss this to infinity"!

When you say you're taking your sister to surgery with you - is that instead of your DH or in addition to? While you are very correct that you need to take care of YOURSELF - try not to push him away completely if he does try and be there for you - I'm saying this with the assumption that he will go to counseling! This is all still very new to him - and that doesn't excuse the hurtful comment - but maybe as he learns to deal with it he'll get better.

As far as kids - my only DD was 18 and just graduated from high school. She worked part time at my office and knew I was going to the Dr. that day because my left breast was twice the size of the right - so she came back to see me when I got back from the dr. (I'd gone assuming it was an infection) So bless her heart - she probably got the news the worst way of anyone - including my husband. I'd come back to the office to do payroll and was trying to keep it together long enough to leave and when she came in I burst into tears! She and DH went with me for the biopsy and then to the surgeon to get the "official" news. Since I'm assuming from your picture your kids are younger the advice I have is to be as honest with them as possible. You don't have to tell them every little fear - but don't try and "protect" them too much - they'll know you're hiding something and that makes them more afraid then the truth. My DH had some serious problems about 8 years ago and we first tried to hide them from DD - but she picked up on it and was very stressed out and did badly in school. Things were much better once we communicated with her.

Shugardrawers - I have not felt the way you do - but I haven't had as advanced a case as you do. I think I would probably feel that way as well. Speaking for myself - I wouldn't want to feel like I was alive just to say I was alive - in other words - not having a "life"! I think you should talk to your therapist - that's what they are there for. I think if you put it the way you put it here she/he would understand your feelings and not feel like you were suicidal.

 

[Shugardrawers]

I actually did finally discuss my feelings with my therapist this morning. She seems to think it's pretty normal and encouraged me to find things to live for. I don't think she quite gets what I was saying. It's not that I don't want to live, it's that if I'm going to die anyway, I'd rather just get it over with. I'm afraid of suffering. Dh wants me to hang around as long as possible. I think if it comes down to it, he won't pull the plug even though I've said that's exactly what I want.

I actually didn't tell my family right away. I told a friend and made her promise to keep it quiet until I was ready. A few weeks later I told DSis and asked her to keep quiet. She did tell her Dh and he had a cow when he found out I hadn't told my Dh yet. I just didn't want to break his heart. Maybe this sounds conceited, but I know my Dh adores me and he'll be beyond devastated when I'm gone. I think he'll never marry again because he won't ever get over it. I don't want him to be that unhappy. Anyway, I finally told him and he took it in his usual stoic manner but occasionally his fear pops up. He nags me about my diet and getting plenty of sleep and exercise. My nephew 6, was just told I am very sick and that my medicine would make my hair would fall out and I wouldn't be able to play on the trampoline with him anymore. He's too young to understand the concept of death. He often asks me if I'm still sick and when I'm going to feel better. I just tell him yes, I'm still sick and that it will be a long time until I feel better. My niece 16 and DD 17 were both just told the truth. They both took it very well.

 

[MerryPoppins]

My kids were 10 and 14 when I got the news. I sat them down the day of my diagnosis and we had a frank discussion. I told them I was going to fight and beat it. That we just needed to hang together. The "cancer" word was what really frightened them. DD 10, didn't want to talk about it. She listened and then told us that she didn't want to hear any more. I cuddled her a lot over the next few weeks and carefully asked if she was ready to talk about it, but she wasn't. She pretty much held her feelings in until after my surgery when she finally cut loose and expressed her fears. DS was more open and expressed fears from the beginning that I might die. A teacher at his school had died from breast cancer, so it was pretty real to him. But we worked through it all. I'm not sure there is a best way to approach the subject. It probably depends a lot on your kids.

I'm so sorry that your husband is reacting this way. If he offered to go to counseling, I'd be looking for a place to go (or send him if you think that might be better). There are group sessions for spouses. Maybe he just needs an outlet. At first, there were things I couldn't say to my DH. He was trying to be so strong for me and supportive, that it was hard to tell him I was afraid. It was like admitting it would diminish his strength or scare him. But we finally got to the point where we let all that out. Sounds to me like he needs to face his fears and hear that you can beat this.

 

[NHAnn]

It's been eye-opening reading everyone's different situations and family issues. Certainly shows that the only sure thing is that everyone's experience will be different on this journey!

Sending hugs and good thoughts to all........

 

[MinnieM3]

Laurajean.....forgot to tell you..... I was lucky in the my DH was very supportive and wonderful during my cancer journey.

THEN, mid way through my chemo HE was diagnosed with cancer. (renal cell carcinoma....lost half his kidney....no chemo or rads). I don't suggest throwing that in your DH's face, but it just goes to show you, YOU NEVER KNOWS WHAT LIES AHEAD IN YOUR LIFE.

If anyone had ever told me 2 years ago that, at 44, I'd have stage 3 breast cancer, I'd have said they were crazy.
Each day's a blessing! Hang in there girl!

 

[mickeymost]

Hi Everyone

Hope you are all feeling well. I just went to the oncologist today. Now I have to have all of the tests before the final decision of what to do. Bone scan and head to toe CT's. The good thing is I work for a radiology group and will know my the results the moment the tests are done. Tumor markers came back okay, and the PET was okay, so I am hopefull. I have got to catch a break eventually.

I am officially off of the Tamoxifen and will be starting Femera next week. Can anyone tell me how Femera is if you are on it? I'm hoping to maybe lose some weight now that I can flush the Tamoxifen in the toilet.

Laurajean - I hope you are doing well. You are in my thoughts and prayers Stay strong, you will get through this!

Have a good evening everyone. I haven't been able to get on the computer much between Dr appts and packing this house up. They moved our closing date in Florida to Aug 24 now, so now I will be homeless for a week or two. I hope to get in soon so the boys can start school.

Kelly

 

[Amy]

MickeyMost - I went off Tamoxifen in Feb. and switched to Arimidex. Unfortunately, I didn't start losing any of the 40 pounds I'd put on. Of course, there was an awful lot going on - my mom was dx with lung/liver cancer in Feb. and died in May, so I know I wasn't eating right. The Arimidex is giving me awful bone pain, mostly in my heels. Let us know how the Femera goes - seems like you can't take any drugs without having some kind of side effects!

 

[mickeymost]

Does anyone have any info on Femera. I can read all I want, but it's not the same as someone who is taking it.

TIA for any info

Kelly

 

[NHAnn]

Hi all.....

Kelly...I do not have any info or first ahnd knowledge on Femara...but I'll bet when laurabelle gets back, she will know of someone on it, she's so connected with so many Survivors!

Well, the radiation fatigue seems to be setting in a little...the last couple of days I have felt a sort of heavy weariness settle in by late afternoon.
Today was treatment 14 of 25, so I am over the hump And on the flip side I am not having as much trouble with falling asleep or staying asleep ...gotta find those silver linings

Sending wishes for peace and good health to all....