Supporting Each Other

Anonymous · February 2020

I agree with all of you who have posted on this thread, and appreciate reading about your experiences. I tried an in-person cancer support group in my very small community back in 2008 when I was dx stage 1, 44 years old and starting chemo. The other women were all lovely and kind but most were over 70 and their concerns were really different than mine (mine were mostly about my kids who were 9 and 11 at the time). I found that the in person support group isn't for me, at least not regarding cancer. I prefer to check in here, support where I can, learn from all of you and then I can go back to my day to day life.

Nowaldron - I understand how you feel. I did find support on here in 2008 with a group that was really about the city we all live near (various stages and types of BC). Most were new to BC, starting chemo or finished with chemo and starting radiation. We met every 8 weeks at a Red Robbin and it was fun. Eventually, everyone got busy and we met less, some meet up annually at the Komen walk. Right now I feel a bit like a new student at school and I am trying to find my place. In 2009 I would occasionally post on a thread where we were all starting rads at the same time but somehow, it never seemed to click and I felt awkward. Since I was dx with mets, I reached out and received great advice about my work (give it a year and see how you feel - don't make any drastic changes). Upon learning I was starting Ibrance I read up and posted on that thread and the support there is amazing. I have learned so much about the medication and what to expect. This is where I think this message board excels.

Nowaldron, 4 years with no progression is definitely something to celebrate! I am so sorry that your husband died - so unfair that many of us have to deal with so much. Happy to hear that you feel good and have critters! I love my 2 labs.

Sadiesservant - love the photo of your dog! I am assuming she is Sadie?! I too have been rediagnosed in my mid 50's and most would not know I am on treatment or am dealing with a recurrence (or metastic cancer) and for now, I'd like it to stay that way. I am struggling with wanting to know how much time I have left with the reality that no one can tell me that along with the hopeful knowledge, like Nowaldron stated, science rocks! I am on treatment that was just approved in the US in 2017, not that long ago.

Hope you are all having a good evening and week! Happy Galentine's Day to you all!

Sadiesservant · February 2020

Hi Aprilgirl,

Yes, that is Sadie, my demanding girl. She keeps me bust too!

I stressed a lot in the beginning about “how much time”. Now, I’m in a better place, realizing the answer to that question is elusive to everyone. I don’t worry about it much now although I do hope that there will be advance warning in terms of when I should step away from work. For the most part I enjoy it but it does take time away from more entertaining activities. I’d like to have the luxury of time to really let loose before things get too difficult.

Hugs to all.

emac877 · February 2020

This is a good thread. I will admit I'm probably more of a lurker right now because I was recently diagnosed with progression to the bones. I don't always know what I think or need or feel so sometimes, it's comforting just to come here and be reminded I am not alone and others are managing life with this diagnoses too. I had been on here earlier when I was first diagnosed and going through chemo and radiation then stayed off the site after I finished my initial treatments because I didn't want to think about cancer any more. I find myself back here now because I know it's not going away and there are times I need to be encouraged and times I need answers to questions. Nobody is really going to understand that as well as a group of people going through a similar journey and if we can be there for one another in that I think it's a good thing. I was particularly grateful to find the stage IV thread on this site for that reason. I am in general not fond of social media and have found Facebook depressing lately so I don't spend a lot of time there. Here I have found people to be respectful, even when the point of view is different and I like that too. Thanks for starting this topic.

DivineMrsM · February 2020

I'm not sure what others' experience is, but maybe because I've been here many years, it's not all been a bed of roses. I don't want anyone to think, oh she's on those boards and been friends with everyone for a long time. It's not the case. Some I click with, others are best I avoid.

I've had some ups and downs as a member, but I choose to ride the occasional storm out rather than leave the forum altogether. I don't allow myself to get too caught up in controversy, altho I will share my opinion, even if it goes against the opinion of the crowd, and I will also come to the defense of others. I was on a thread for quite awhile when some conflict came up. After making my opinion known, which apparently was not the popular opinion, I was shunned. Seeing the writing on the wall, I quietly left the thread without explanation. I stayed true to myself. Not one of the many posters there ever reached out to me with a pm to ask of me. It was a time I was really going through a lot of difficulty medically and personally. So, where I thought I was supported, it turned out there was some superficiality going on that only revealed itself after awhile.

I moved on. Lesson learned. Overall, I feel supported by the set up of this forum.

Simone80 · February 2020

Divine, I'm not sure which thread you are referring to above. I've learned so much from other MBC sisters in these forums. I'm only 1+ year in and It's hard for me to know how to respond to some who have been through multiple lines and who are facing so many issues.

I also enjoy the MBC fb group but there are some heated discussions there sometimes. People can get rather mean. I was also in a Lyme disease fb group since I also have Lyme disease. Someone posted a lengthy comparison of Lyme disease to cancer, complaining the cancer was getting so much research funding when Lyme was just as bad. I told them that I found that offensive and thousands of people die daily from cancer. Boy did that start a bunch of nasty replies. I quickly left the group.

DivineMrsM · February 2020

Simone, I was intentionally vague about the thread I mentioned. I’m not going to out them.

I’m sure you really took the heat from the FB group when you said Lyme disease did not compare to cancer. The average person is not equipped to field all the criticism aimed at them from a multitude of anonymous FB posters from all over, even though you have personal experience with both. You were smart to abandon that group! Especially at stage iv, I’m careful what I give my time and energy to. Online controversy is not something I care to get too embroiled in and one reason is I’m not really going to change someone else’s opinion. Slinging insults back and forth is pointless.

JACK5IE · February 2020

Miss Rabbit...thanks for starting this thread.

Sometimes I don't know what to say in response to some posts here. I end up erasing things and starting over a lot. Sometimes I end up just saying that 'my thoughts and prayers are with you'. Then I wonder if I'm upsetting anyone if they are not religious.

The bottom line is that my heart goes out to everyone here and I think that's true for all of us. Some know how to express it better than others, but we all care. We all know what we are all feeling because we are right there with you.

As an aside, again I will stress that I think a quote feature could help with this since some people seem to get missed when you are replying to multiple people in one post. I also think a 'like' button would be a tremendous help to let someone know you care even if you may not be able to express it in words.

Hope you are hanging in there Miss Rabbit. 🙂

exbrnxgrl · February 2020

Jumping in here... DivineMrs.M and I have been on bco for roughly the same amount of time. I agree that there have been ups and downs but I give credit to the mods for maintaining a civil atmosphere here, for the most part. Things have gotten heated from time to time but the mods are very responsive and responsible about dealing with those situations. Divine, btw, is one of my favs!

Just as IRL, we get along with some more than others. Breast cancer doesn’t turn us into saints. We are who we are. Let’s not forget that communicating online eliminates all visual cues and some folks don’t express themselves well in writing which can lead to miscommunications. May I also add that rather than dealing with folks who you clearly are not getting along with, use the block user feature. This is rarely needed, in my experience, but a valuable tool when the occasion arises. Take are all.

Anonymous · February 2020

Relationships take time to nurture and I think that is even true in the online setting. Having just typed that nice PC snippet. I will say honestly its hard to read and post here sometimes. Its hard to go through this crap in our own lives, but then again its also hard to watch others go through it too. It pisses me off to see what cancer does to people. To feel helpless as others struggle, being scared its going to happen to me too, or what the heck is going to happen to me. I struggle with the desire to connect but also with the desire to "run away" if that makes sense. I find the the Stage 4 community here overall more intimate and the environment generally drama free and that's okay. I'm apart of larger groups (facebook group) and find that while they are great for information sometimes I've noticed what people can talk about is curtailed. I do find a more fluff and puff attitude to the seriousness of the diagnosis in regards to certain mets ....IE: Bone mets "isn't that bad"...kinda thing which irks me. I think going through all this minus the support of the internet would be a million times harder and so I'm thankful I do have a place to go outside trying to peptalk myself and to not feel alone.

DivineMrsM · February 2020

Rabbit, there’s a certain balance one has to find in belonging to an online group of women with metastatic breast cancer. We each have to find what works for us individually. We know we will experience loss; we will also be able to offer support to those new to the diagnosis. Some women lean in to it, others take a break from the boards. Whatever works for you in the moment, go with it. I think it’s about being in touch with our own feelings. If you want to connect, do so. If you want to run away, do so. If you want to do both of these things over and over, do so. There is no judging. There’s no right or wrong. This is not about putting any pressure on ourselves to be something or do something. It’s just a meeting place.

JACK5IE · February 2020

My sister just asked if reading things on this site bother/scare me. I told her sometimes it does yes, but for the most part it helps to know that I'm not alone in this, because at times this disease can make you feel very lonely. So if reading something upsets me I just walk away for a few days. But more often than not I find it very comforting to be here.

Simone80 · February 2020

I feel the same Jack5ie. Sometimes it's very sad to read some of the posts. I also just take short breaks. I have learned so much from the ladies on this site, and am so grateful to have somewhere to discuss things I wouldn't discuss with family and friends.

Anonymous · June 2020

Ive been thinking about this thread. WOW 2020 has been a year of so many feelings, scary events and just overall a lot to deal with in addition to my stage IV dx. I keep striving for my "new normal' .

Good news is I am used to my Ibrance and Fulvestrant adn that seems to be working. Hope you are all doing ok!

JACK5IE - i agree, this dx can make me feel lonely. I feel like you all understand what I am going through and I have learned quite a bit about breast cancer and what to expect. Sometimes, it's challenging to be with friends or coworkers that have valid complaints about things that seem really trivial compared to what we are all dealing with. You know what I mean?

JACK5IE · June 2020

aprilgirl...I know exactly what you're talking about. I find it very difficult sometimes to feel sympathy for the people that complain that they can't go to a restaurant, can't get a haircut, can't get their nails done, can't go shopping, can't go to a bar, etc because of the pandemic. Their lives changed for a only a few short months while mine has changed entirely and has been shortened drastically because of cancer. I hate cancer and I hate everything about it. The only thing I can say that I am grateful for is that it has brought me closer to God again. Maybe that was the plan.

Hugs to you all.

Anonymous · June 2020

Hello ladies I know for me personally its been a rough few months. With all the craziness going on I feel like that meme going around lately with a guy peeking out his door asking "What page of Revelation is it today?".

A stage 4 diagnosis is lonely. We live with realities and challenges that will last our lifetime. When it comes down to it the only ones who understand what we go through are each other and God, and that's how i feel.

Supporting Each Other

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