Just wondering....

PinkGirl · 09-23-2007, 03:20 PM

Just wondering if any of you who do not have mets feel like you "somewhat" don't belong here, or maybe that you have not had to fight as hard as the others and shouldn't be complaining? I know we are all welcome here and everyone is amazingly supportive and helpful, but..... I often feel like a bit of an "outsider" because I am not on any treatments and I don't have to deal with stage 4ness, cyberknives, gammaknives, tykerb, vaccinations, clinical trials etc. Just wondering if any of you feel the same way.

Brenda_D · 09-23-2007, 04:29 PM

I'm somewhat "in between", even though I've been Staged at IV, and told I have bone mets (but post chemo bone scan says NED), I haven't dealt with much of what most others here have been through, yet.
I sometimes feel that I don't quite fit, because I may not have as much to say as the long timers here, experience-wise, but we are all HER2 positive, and that's what this forum is all about.
I read more than I post, but this is a great place to get good info, and support when needed.
I do kind of know what you mean though. It's just that we are kind of newly dx'ed, compared to others.

Keep hanging around though. I feel like this is the best place to be for Her2 positives.
We have to stick together!

Andrea Barnett Budin · 09-23-2007, 04:31 PM

That is an excellent question. I look forward to responses. My Stage fourness and my ongoing Vit H didn't totally do it for me at first. I felt like every one was ignoring me and busily interacting w/those familiar to them. Must have been my frame of mind. Like Havah, I felt like an outsider. But -- now I have settled and feel at home. And you, my Pink One, feel like I've known you forever, regardless of your med history. You are a Sister, my dear. I embrace you and your sense of humor. We need that around here midst all our intermittent dark thoughts.

Come to think of it, at one point on this board I felt scared away. My attitude was so peachy and I did/do coach those newly dx who are sent to me. Friends of friends who want to help but don't know how cause they've never been there. So I definitely have always felt I needed to share my viewpoints and my experience to give someone a hand up. And I often got such positive responses, and would keep up my relationship w/these newfound Sisters and fell in love a few times (you know what I mean). Some of the most incredible people I know I have found through bc, whereas our paths would not have crossed otherwise. So sometimes I'd log on here, way back when, and I'd feel myself being sucked in to the sadness vs what I felt when having a one on one conversation, which reinforced my thinking and elevated me, knowing I was helping another Soul.

My friends who knew of my *counseling* would lovingly tell me that I shouldn't let it drag me down. I've done so well and need to keep my health a priority. I would always tell them, I'm good, I feel wonderful serving this purpose. It actually motivated me to write the book I've been working on for 100 yrs. But for a while there, this board intimidated me and made me feel shaky, unnoticed, unanswered.

Much love,
Andi

Margerie · 09-23-2007, 05:18 PM

I have never felt I don't belong, even though I am Stage 3 and doing a tumor vaccine clinical trial

I am grateful for everyone's input and discussions. I don't really think of people as their stage. Some discussions I don't have much to contribute- but general support.

I think all of us that have not been diagnosed Stage 4, know we could be next. That is just the facts until there is a cure.

Glad to know you Her2 sisters!

Audrey · 09-23-2007, 05:22 PM

Hi Pink Girl,
I've wondered, too, about whether I belong here anymore, since I was diagnosed in 2001 and am currently NED. I haven't been on treatment for years and am basically feeling good now and adjusted to my "new normal"--sometimes I ask myself why I still check this website so frequently when this is whole bc experience is supposed to be behind me... the reason I'm still here is because I haven't forgotten what a life-line this place was for me when I was newly diagnosed and didn't know much about herceptin or how to deal with any of this cancer stuff. Having cancer was a life-changing experience for me and even though many of my friends/family act like it's all behind me now for good, I know that recurrence is always possible and I like being able to come here and keep current on the latest treatments. Plus, I'm so grateful to still be here after such an uncertain prognosis, that it makes me feel great to be able to offer a little encouragement to someone newly diagnosed and say "Hey, I was in your shoes once and know how scary it is...I've been there, done that and lived to tell about it" -There is no expiration date on being a cancer survivor--I figure if you've been touched by this disease, you have most likely learned a few things in the process and have something valuable to offer others and pass on.

Linda · 09-23-2007, 05:26 PM

Thanks Audrey. I agree totally. Wisely written.
Linda

Joannie · 09-23-2007, 05:29 PM

I can honestly say I have never felt I didn't belong here. I am so incredibly lucky to have found this site and the support I have received here has helped me in so many ways. We all come to this board for different things. Some post a lot, some have great technical knowledge. Others just show the support by letting us know someone is always there. I am probably guilty of not posting as much as I could....I can tell you though, I visit this site 3-4 times a week for 4 years! I pray for all of you; for hope, courage, and faith.
It is difficult at times to read a post when we have lost a sister to BC or when everyone was getting Herceptin and I was ineligible because I didn't receive it during treatment....However, the information and support that I receive here on a weekly basis is a gift I truly appreciate. This website and it's members provide updates on "cutting edge" information about treatment, surgeries, doctors, etc. Thanks for all that you all do. I genuinely feel connected to all of you!
Joannie

Mary Jo · 09-23-2007, 05:41 PM

Hello,

First off, I hope and pray no one that visits this site feels as if they don't belong here. We are a family. Sisters in the fight AND brothers. As far as the journey goes, we are all at a different place. Just like life. Some of us are stage 0. Some of us are stage 4 and some of us are in between. We are all her2 breast cancer survivors and we are all important in this fight. We all have been blessed with different gifts of knowledge........different gifts of compassion............and different areas of understanding depending on where on the journey we are. We then can use those gifts we were blessed with to share and help those on the journey with us. At times we need to reach out for help and it is those times those "gifts" can then be shared with us.

Pinkgirl, you are important. You are a valuable member on this site and you're knowledge, compassion and understanding can be shared where needed to others along the journey.

Love & God's Peace I send,

Mary Jo

Sheila · 09-23-2007, 05:58 PM

Pink Girl
As so many others have said, the stage doesn't matter...we are all here because we ARE survivors, or caregivers, or those who have lost a loved one to this disease...each of us has something to give, a way to help someone else...we share a special bond, and the gift to help others through what we have been dealt. There are many early stage breast cancer survivors that can help latter stage ones....I have learned so many things from others here....We are all in this for a better future...for us and our loved ones. The one small bit you share today may change a persons life.

kcherub · 09-23-2007, 06:02 PM

I agree that we are all in this together, no matter what our "stage".

I have sometimes felt that I didn't have the "right" to complain, or that I didn't have enough to contribute here! However, I have found that everyone here is SOOO helpful and caring and that I can contribute--even if it is just to lend an ear...

Hang in there!

BonnieR · 09-23-2007, 07:29 PM

I belong to another support group where people sometimes use the term "it hasn't happened to you YET" (meaning "you're elegible too"!). The context is different but it can apply here. None of us knows what the future may hold with this disease. But meanwhile we all share the diagnosis and can support each other. Offereing a sounding board and a shoulder. I am grateful beyond words to have found all of you...

Bev · 09-23-2007, 08:40 PM

I was intimidated at first, lurked lots. I was so anxious and uninformed. Knowledge is some sort of comfort. I have a little bit of guilt being a II, as we have lost some personal friends as well as many cyber friends, but I can't stop checking in. The benefits far outweigh the negatives. Hang in there, you'll be able to sort out how you feel as time goes on. Bev

Believe51 · 09-24-2007, 06:32 AM

I can express the thoughts that you feel like an outsider because there have been times that I have said outloud that I am not the one suffering from breast cancer, thus made me view myself as an outsider. Of course my girls made me know this is not the case and I am here to say the same to you Darling!! I may not be the patient and you may not have stage IV, yet we are still on this journey and it is important that we all come here. You do belong my Pinkgirl and your journey is still important to us. We are all needed here to discuss our fears, share our joys, ask our questions which may I add helps others when we find the answers. We come here to cry and to triumph, to support and to love, to pray and to conquer. Also we can rant and rave if we needed to. We are a family and you are a great part of that family and surely we cannot be so without you.

So my Love please take my words into consideration. I want you to know that we are all this incredibly important family with bonds that can never be broken. Smile My Pinkgirl and know that you are loved!!

>>Believe51

PinkGirl · 09-24-2007, 06:35 AM

Hi everyone
I have definitely felt welcome here from day one. It was AlaskaAngel who recommended this Board to me and I am very grateful for that. I am learning so much from all of you -- it has hugely helped me to know other people who are Her2+. I was being honest not critical of anyone. Maybe my "roll" on this Board will be to keep the Chinese Hamster Ovary thread going

Thank you to all of you. I very much appreciate all of the comments from my brothers and sisters.

tousled1 · 09-24-2007, 07:42 AM

No one should ever feel that they don't belong here just because of their stage of disease. It's not staging of the disease -- it's the knowledge and support we get from the amazing women on this website. No matter what stage you are or where you are in your treatment plan this site offers so much. Also, each and everyone of us has a right to complain. We didn't ask for this dreadful disease but we must deal with it. This board is about so much - knowledge, support, compassion, empathy, a shoulder to cry on, a place to complain, a place to share both good and bad days, a place when you need comfort -- just a place where you can come and be 100% yourself. Each and every woman/man who comes to this site has something worthwhile to offer and should never, never feel that for whatever reason they don't belong here. We are here for each other no matter what!

Andrea Barnett Budin · 09-24-2007, 09:36 AM

So true, Sheila, You may feel like one small person in the world, but what we say and do can make a world of difference to someone else... Isn't that mindblowing???
Andi

AlaskaAngel · 09-24-2007, 12:15 PM

I have spoken here about intimacy issues, which are no where near as high on the critical list as the issues others face, and in that sense recognize that "complaining" is relative. But I feel that not expressing feelings about it is also a way of avoiding dealing with a genuine problem that doesn't just exist for those who are diagnosed early stage, or are NED. This is also why I think it is so important to be accepting of anyone's choices in pursuing treatment, not pursuing treatment, and palliative care.

The forums are an exchange of information and we all pick and chose what threads we relate to or can contribute something to. The inclusiveness of this site is a testimony to the efforts of Joe and Christine.

AlaskaAngel

tricia keegan · 09-24-2007, 02:02 PM

I've never felt I don't belong, or an outsider although there's still so much I don't understand that I love to come here and applaud the knowledge everyone shares here.
I'd like to think herceptin has done the trick for me and I'll never get mets but if ever I do, I know I won't be half as scared since knowing some of the brave ladies here who continue to live life and be happy while still in treatments for stage iv. You've all taught me this need not be a death sentence anymore and I recommend this site to anyone just starting out.
Hopefully one day I'll even understand some of the scientific detailed posts which right now just leave me in awe and feeling pretty dumb!!

mom22girlz · 09-24-2007, 04:39 PM

I always felt like I belonged, but I often feel like I don't have much to offer since I am Stage 1. But, I want all the Her2 ladies to know that I read here often, think of everyone, and pray for all. Even though I do not post, I always pray. I am thankful for all the support and knowledge I receive here. susan

chrisy · 09-24-2007, 08:39 PM

Hey Pink,
Interesting question...I have often felt like I don't belong because I DO live with Stage 4-ness! Even so, there are things that are less, or more relevant to my situation and I learn from everyone - sometimes even by the questions people ask. You never know how many people YOU may be helping here, just by your presence and participation. Even beyond hamster ovary enlightenment!