Bottle o Tamoxifen

Hi ya'll.  Just reading though everyone's thoughts this afternoon instead of vacuuming my floors. You guys are all amazing, strong, giving women and we all are better for having made these invisible yet meaningful bonds of friendship and solidarity.  Hope you all have a good evening and rest well tonight.

PS...did you see the thread were some women's libido INCREASED when they started taking tamoxefin??????   WTH? 

June - I agree with you on feeling the way you do about just rads and little white pill.  I know we shouldn't feel that way but it can always be worse.  I know when my friend asked me to walk in the survivor's walk I didn't feel like I should as she had been through 10 years of chemo and i felt she wa the real survivor.  Unfortunately, a lot of people out there feel the way we do and that it isn't that much even though it really is still a lot to go through.  Not sure I would have done rads if I realized the after affects.  And we all know that I hate Tamox but am afraid to stop taking it.

See why I come here......thank you all for your insight and being there for each and every one of us!  Love you all.....you sure do know how to make a gal feel good.

Hi All,

 I don't "talk" as much as I used to when all my problems were new ones but I do "listen" a lot and don't hesitate to talk when I need some support.  This is such a great group and you never have to worry that your problem(s)  might be considered too small compared to what someone else has had. 

It's most times those who have been through the mill that will be the first to encourage you with whatever se or other troubles you encounter.

Pats on the back to everyone on here.

Bonnie

CatbirdC 

Haven't been on too much in the last few weeks.  Tried a quick run through to catch up with some of the posts.  Everybody sure has been busy.

June, I think with DCIS you have to wory about more cancer, for those with IDC we worry about mets and more cancer.  But, I don't think one is less stressful than the other, so give yourself a break.  I too understand the chemo guilt.  With my oncotype and a chemo benefit of 2%, I did not do it.  Often look at others around me online and at support group I went to and felt like I really shouldn't complain.  Why I started on BCO because Tamox and rads SEs are real. They are real treatments and life-changing.  It is nice to have someone understand that.

This leads me to my question, a bit off the topic of Tamox SEs, but I would appreciate your input.  Have not seen anyone in my family since Christmas.  The occasional card, email, etc., but really "they haven't wanted to bother me" and "if I need anything I should call and let them know".  They all love me, but don't have a clue what to do with cancer.  In my family people don't get cancer and live to be 80 or 90.  I think I have rocked the boat.  Going up for Easter and don't know what to share or say to them.  Since I didn't do chemo they think it isn't that bad (no I just wouldnt get much benefit, doesn`t change diagnosis).  Don't want to upset everyone, but they think now that rads are done that the cancer is over.  Not really!!  Skin healed from rads, but still have inflamation in ribs and lung, pain from scar tissue forming and nerves cut in surgery, a follow-up MRI in next month to look at something seen on other side in pre-op MRI, tests in May and first follow-up with MO, and also the ever present worry of mets and the future.  Also lingering fatigue from rads and everything else I have been through in last 6 months.  SE's from tamox settling some in month 4, but still need painkillers for bone pain, anti-inflamitories for arthritis in shoulder that has flared since starting tamox, sleeping pills for the insomnia and had to get new glasses.  Not to mention the every lovely digestive issues, dry eyes and skin, vag discharge, a period there or not on its own whim and a crappy memory.

Sorry, I think this turned into a bit of a rant.  I hate myself when I sound this whinny.  Don't get me wrong, I am grateful that there are treatments that can help me, but I just wonder if all the "I'm fine" is just adding to my stress.  Is it best to just "fake it till you make it"?

Yes, June, we have all been through the mill! Just the cancer diagnosis alone is enough to turn your world upside-down! Then the rads which leave their eternal SEs and the Tamoxifen for FIVE YEARS! I always think of other women like the other moms at school or at the pool and I'm thinking, gosh they have it so easy. They have no idea what we've been through and are still going through. I'm glad for them, but they just don't understand the DEPTH of this diagnosis. All the time I hear, "Oh, but you're better now aren't you?" I just say yes, because if you say well, actually, no it sucks and it's really hard to deal with they either don't really want to hear that or they cannot possibly understand when you start explaining. I just always say everything's fine. But it's not, and I'm so thankful I can talk about it here with you ladies because y'all always understand. It is hard to get through this!

Jane - you said it, girl! All of the above! The SEs are at the very least bothersome and at the worst painful. I loved your rant - it's great to express what many of us are feeling! Yeah, my family has no ears when it comes to this disease - funny, they only ask about it when they think something's wrong with them. But I'm with Jo - I found out that "fake it till you make it" only caused me to get depressed about this. Believe me, I tried to do that for about a year and I feel worse now. It may work for some short-term things, but this is forever and our families need to learn that the threat of cancer is here to stay. So I talk about it all the time with them whether they like it or not - they have to be reminded. They'll throw in "but you're better now" (UGH) and I say on the outside, yes, but not necessarily on the inside. And then I go through all the things I worry about, and if they're obnoxious about it, I'll throw in "and you're not safe either" - haha!

Jo - I'm going to make an appointment with my doctor for next week and ask about those drugs you mentioned. Thank you so much for reminding me again, because I believe you said something before and I went back to square one on this - thanks Tamoxifen or senior moments or whatever is messing with my mind!

Speaking of awful SEs from this little white pill, last night I was sitting in the recliner with my feet propped up and the arch in my right foot just starting arching like a ballerina (and taking my big toe with it). It felt like someone was slowly breaking my foot! It was fully arched and I couldn't straighten it out - it was locked in that position. It felt like it went on forever but it was probably just about a minute, but oh that hurt. It was preceded by a few feelings of my foot starting to lock up but they were very brief. Then came the big one!

Haha, Linda, I see you have about the same amount of patience as me! Not one of my virtues... 

Love you, too, June!

Harley

Jane - Just yesterday afternoon I was talking to my brother and I said something like "Maybe I should go ahead and do this because you never know what the future might bring." He asked what I meant, and I said well you never know if the cancer will come back. Typical of my family, he said, "Well, I could die, too. I could get hit by a truck or have a brain tumor. You never know." sigh.... They will never get it. Never, ever. You're right - I need to stop wasting my breath on them! I need to do what you said - just take in the love and forget about what I can't talk about with them.

Harley - I know your last day with Tamoxifen is not too far, you lucky girl! Do you still have any side effects or do they finally go away? 

I was diagnosed with early stage breast cancer, so I can only speak from that perspective. I think our well meaning family and friends are half right on this. They make this point "I could die tomorrow.. I could get hit by a truck... I could have a brain tumor". They are right, and its a point we can't ignore. None of us knows when our time will be. They just might as easily die before we do. That's possible. I feel its necessary for me not to dwell too much on the fact that my day may be up sooner than not. It's not good for me to focus on it.

What our well meaning family and friends do not understand is the fear that always resides inside of us. The fear of reccurrence, of new primaries. They can't understand because they have not experienced being diagnosed with cancer.

They don't wake up every morning and think, "Will I get hit by a bus today?" They don't carry that fear with them all the time. I MUST find a way to release my fear, so it does not have a merciless grip on me, and keep me from living a full and joyous life that I CAN have.That we can ALL have.

Keep strong ladies!

I am so glad to read the above comments about what family/friends say because I literally want to pull the hair out of my head when someone says that to me....thanks for bringing some comfort in my thoughts about it!

You all bring up so great points about family and I know they just really don't get it.  I am from a very large family all brothers.  I know that they have worried about me but I don't think that they really get the fear that I live with.  I can say I am much better now than I was a year ago so I hope that continues to get better when I don't think about cancer all the time. Maybe after my reconstruction is finished that will kinda finalize some things for me but then the dreaded tamoxifen will still be there.  I have been off of it for almost 4 weeks and I feel so good.  The thought of going back on it makes me cringe.  I see my PS in two weeks and I am sure I will start back on it after seeing him.  Oh but I did get my last drain out today so I am drain free.  I can start driving after Monday if I am not on pain meds and I am really down on those so I think I will make it.  I also get to move into an underwire bra after Monday.  Will be nice to not wear this surgical bra 24/7.

Sherry - Big congrats on getting the last drain out.  Now let the healing begin.

Yaaaahhhhh sherry! What a difference after those babies come out!

Galsal.....absolutely and anxiety issues as well as moodiness....extreme moodiness......feel like I'm on a rollercoaster!