Update: I am withdrawing from this board - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

6,604 members8,140 posts

Update: I am withdrawing from this board

91 Replies

Hello. When I found this board almost 4 years ago, it was a Godsend. I learned a lot from brave, thoughtful, irreverent, compassionate informative women, some of whom are sadly no longer with us. I miss them.

Women like Nan, Barb, Jo, and others are deeply missed. They are missed not simply because they deserved longer lives, but because they always offered help and wisdom without judgment.

Inspired by them, I endeavored to pay it forward by offering messages of support . In specific cases, I’ve offered information about the legal protections and options based upon my experience as an employment lawyer before I retired in 2019. I answered questions on the board and in private messages about things like how to ask for a reasonable accommodation at work under the ADA, our rights to leave under the FMLA, protection from retaliation when an employee exercises these rights. I was grateful to help.

Sadly, the generous spirit I first discovered stopped being the case when our dear Sandra was attacked several months ago. Sandra's nursing knowledge, information and straight shooting was wonderful. She spent a lot of time helping many of us. Then, to my consternation, she was criticized by several members who disputed her statements of medical fact about certain alternative treatments. Instead of giving her the benefit of the doubt, which she earned for many years, the critics were unrelenting. Yes, folks stood up for Sandra too. Still, an unfortunate line was crossed.

At that time, I said on this board I wanted to step back and watch to see how this continued. Today's unkind comments to one of our dearest and long term members is the final straw. The heading of her post was "My greatest fear of dying." Oh dear, how we all have such fears. This wonderful women shared her heartfelt concern about national events as it related to her fear of dying.

If one did not share her concern, one was free to scroll on by, as another member remarked. Instead, by my count, over 20 board members chastised this dear person, told her to "reign in" her comments, liked the unkind comments, and scolded that she should know better than to share such fears here.

So, with great sadness, I decided to de-activate my account by the middle of next week. To those members with whom I have personally corresponded, I invite you to PM me directly if you want to stay in contact. We can figure out what works. You are appreciated.

For the others, I pray that you learn to show better grace.

91 Replies
BluHydrangea profile image
BluHydrangea

So sorry to see you go. Best wishes for your future health.

SunShineEveryDay profile image
SunShineEveryDay

Sweetheart you can’t! Everyone will miss you as much a as they miss Sandra!!

Just think of how many people you have given courage to, helped with a kind word, made them a bit less scared and gave them

a bit of inspiration or a chuckle and made their day!!

There will always be haters out there! And the more people who see you or hear you will have an opinion! And if you met that same person, in person, you would find out that you would never normally talk to such a person let alone give a hoot about that person’s opinion! We need to learn to not take everything so personal (because it’s about that persona’s opinion and not you) and take offence so easily but rather ignore and let it roll off our shoulders!

Dear Martha’s Vineyard, if you do decide to leave there will be another whole in many hearts!

Much courage and love,

Miriam

Pbsoup profile image
Pbsoup in reply to SunShineEveryDay

I started to respond but you said it all perfectly. …

SunShineEveryDay profile image
SunShineEveryDay in reply to Pbsoup

Ha! Thank you! :)

Bettybuckets profile image
Bettybuckets in reply to SunShineEveryDay

Thank you Miriam… we would all miss Pam being there for us. I respect her decision and maybe she will come back after a break. As Joey Tribiani from TVs friends What those other people say “It’s a Moo Point- you know like a cow’s opinion”

PJBinMI profile image
PJBinMI in reply to Bettybuckets

i'm not leaving. These threads can get confusing as far as who said what....

Bettybuckets profile image
Bettybuckets in reply to PJBinMI

Oh sorry I knew that! Glad you will still be here but am sad MV leaving as I have met her and we went biking together. So nice!

stardust1965 profile image
stardust1965 in reply to Bettybuckets

You did! I have FOMO! 😂

Adele_Julia profile image
Adele_Julia in reply to SunShineEveryDay

I was also going to respond but I’ll say ditto to what Miriam already very eloquently wrote . Stay with us !

MyMiracle13 profile image
MyMiracle13

You will be sorely missed but I understand where you are coming from. It hasn’t been the same since Sandra left. I also miss Barbteeth and Jo and I don’t post as much as I used to. Only when somebody asks about a specific question that I can help with do I reply. Stay well.

I am really sad to read that you have been upset.I remember how I felt when Sandra was bad mouthed and decided to leave. I tried to convince her to stay, mainly for myself and everyone else’s benefit. The site has changed since she left and we have lost a huge source of knowledge, and it will change again now.

Fellow ebiker I always smile when I see your icon against posts. Again you are another knowledgeable lady that has freely offered your advice many a time here, as well as your many many supportive posts and comments.

Whatever you decide to do I will respect, but I will feel the loss.

I will of course PM you to stay in contact.

Best wishes

Clare x

Melpub profile image
Melpub

I missed the controversies--I pop in from time to time--but a lawyer's advice would be wonderful to have. All over the U.S. people seem to be more divided--elsewhere in the world, too. Hoping you'll reverse your decision but if not, I'd like to stay in touch. Don't know how to PM you . . .

in reply to Melpub

To PM Press her avatar and select message.

Claireperth profile image
Claireperth in reply to

I had been wondering how to PM people so thanks for that! 😊

Kruza profile image
Kruza in reply to Melpub

I am with you on that. How do we PM YOU if you leave?

in reply to Kruza

I already sent you a pm

Timtam56 profile image
Timtam56

This is becoming so sad for me. But I understand. We/none of us deserve to be attacked.

But also, we should lose sight of why we all came here. To help each other through this time of our lives, learn from each other, stay sane, and have a bit of a laugh even, sometimes.

I miss all our oldies and dearest women too.

Smart. Honest. Wise and caring.

I have learned so much from all of them. and from all of those I still get wonderful responses from.

I have needed you all.

Your cares and concerns are all valid to me.

And, yes. I am one that if I don't feel an affinity with a post, I don't respond, as in a room full of people, we are never all going to get on.

But why here?

Why attack any one of us here.

Haven't we all got enough going on without this?

So sorry to see you go.

I agree with SunShineEveryDay.

Don't let others push you around.

Chris. Australia. A Very sad 4 year long member of this wonderful site.

in reply to Timtam56

Hi ChrisNot seen you for a while.

How are the paintings coming along?

Clare

Timtam56 profile image
Timtam56 in reply to

Still going great Clare. Here's something I did last week. I'm going great. Just don't want to be anywhere but in my studio or walking little stevie. How are you?

Ink pressing
in reply to Timtam56

Ink pressing - I’ve not heard of that. Great picture.I am well thanks. Still working and trying to stay well.

Lovely to see you

Clare x

Timtam56 profile image
Timtam56 in reply to

I hope you're still enjoying work Clare. Go you good thing. My back pain won't allow me to work anymore. I was a hairdresser. The pain is far too great. And I don't want to take more pain killers per day. It's all I can do just to fit in as much art in day as I possibly can, before I drop each day.

in reply to Timtam56

My back wouldn’t allow me to do hairdressing either - arms out and standing (ouch). My back isn’t fond of sitting for too long either. I have a really good back cushion that is supportive and that helps when my back is bad. I am very lucky that my pain is much less now than when first diagnosed, so I can’t complain.I have seen some amazing Italian office chairs that completely mould to you - might be worth a try for your painting?!

Thank goodness you have something you are able to do that you love

Clare

Beryl71 profile image
Beryl71

So sorry. I missed these comments. I saw the headline and decided not to read as I sometimes do. Depends on my mood and well being. I have always tried to be positive, and sometimes seek reassurance. I wish you luck and good health. X

Jessie55 profile image
Jessie55

Please don’t go. Maybe admin can write to the people who commented or remove them from the list not you x

kearnan profile image
kearnan in reply to Jessie55

Why should adms. remove anybody from the board as long as they are courteous and polite in their disagreement of others? She is not being removed. She is leaving of her own accord. We can agree to disagree. Or at least that is how it should work.

8576 profile image
8576

So sorry to see you go. This forum has changed especially since Sandra left. I hope I wasn't part of offensive. I tend to go the direct route but that doesn't mean I don't get what you and I are going through. Your decision makes me wonder if I shouldn't leave also. The change to this board is too difficult to contemplate. There won't be the same source of information and support. My heart is breaking because this has been a great source and I look forward to every morning reading the problems and successes and hope for the future.So sorry to see yet another person leave this forum.

Cheers, June S.

SunShineEveryDay profile image
SunShineEveryDay in reply to 8576

Hi June,

As much as I love your support for Martha’sVineyard and stand with her to maybe leave this forum also, you should do what is best for you!

Martha’sVineyards was one of the first beautiful lady to respond to me when I first joined here over a year ago and I must tell you, if it weren’t for all the wonderful knowledge on here I would have seriously lost my mind and been left with no hope as where now I feel there is lots!

Because of this beautiful forum where I learned that people can go 10, 15, 20 years I have studied thousands of survivors who had stage 4 and are now cancer “free”! It is the very reason I went back to my onc to tell her her stupid prognosis of 5 years is extremely outdated and she should give her patience hope versus a stamp and putting us in a box with all the other people out there.

Staying in the know is one of our greatest weapons to fight this disease and that’s exactly what this forum does.

Much love,

Miriam

TammyCross profile image
TammyCross in reply to SunShineEveryDay

I have always been told five years. It ain't so? I mean, that is an average, and it is not a normal curve, so what are the median and mode? Personally, doing very well after three years, but I know that can change and is different for others, both better and worse.

SunShineEveryDay profile image
SunShineEveryDay in reply to TammyCross

5 years is so friggen outdated! I mean look at all these beautiful people on here going on 10, 15 and even 20 years!! They should stop giving us such a stupid stamp and start teaching people how to beat the average outdated prognosis.

mariootsi profile image
mariootsi in reply to SunShineEveryDay

I would have lost my mind too!

cpidacks profile image
cpidacks in reply to SunShineEveryDay

Good for you Miriam telling your oncologist that the 5 year prognosis is stupid and outdated. I have never asked my onc my prognosis, but at my last visit I mentioned that I must be "pushing it" still being here after 3 years. She told me, "Oh No". You will be here for another 30 years to which I told her I hope not since I would be 102. I had 27 years between my BC diagnosis and MBC. I feel good, scans are stable and labs in the normal range. I have learned so much from this forum too and am sad that some are leaving. Good luck to all of us in our journey.

SunShineEveryDay profile image
SunShineEveryDay in reply to cpidacks

Hahah 102!! 🤣 🤣 Do it, do it! Proof the whole world they are wrong! Maybe I will try and beat the world Guinness record! 🤣

Woodthrush profile image
Woodthrush

So sorry you are leaving the board. i participate very occasionally but your postings on reasonable accommodation and ADA were extremely useful to me at a time when i was trying to gather my wits after a 2nd diagnosis and figure out how to go forward, and navigate the workplace.

I have relied on the sage and warmly felt postings of you and Sandra and others.

An MBC diagnosis turns your life sideways.

You and Sandra will be sorely missed.

Algarve profile image
Algarve

Why should a few ignorant people spoil it for the majority Don’t let them win 🤨

diamags profile image
diamags in reply to Algarve

I think that the feeling is why should anyone have to withstand very public, verbal attacks when all they're doing is trying to help people with the same horrible disease as we have? There comes a time in people's lives where it just isn't worth it.

kearnan profile image
kearnan in reply to Algarve

Who is the one that decides others are ignorant? Some agree and some disagree with some posts. I never do supplements, juicing and/or read books on cancer. I do not come on here every day. Probably every few weeks ONLY bc it was becoming us vs. them and we have enough on our plates with arguing with each other. I would personally NEVER take advice from anybody on this board as to what I should add or not add. But I do come on here to see what side effects, other may have had on new medications or what was done when it was spread to a different area.

There are hundreds of these boards out there. I remember when I first joined, I had become friendly with a woman whose name, unfortunately, I cannot remember. She was diagnosed same time I was, had it in her lungs and her spine and it was nice to have a "friendly" conversation with somebody.

Then I did not come back on for like a month and when I did, I see that that lady's daughter had posted that she died on the hospital table during a procedure.

That shook me for a while and then I stayed off for quite some time. From what I read (from other members) I felt for both of the two that were involved in some kind of disagreement (sandra was one). Then everybody started taking sides which was a bit childish and it seemed to make things worse.

I understand your decision, however like everyone else has said, you shall be really missed.I suppose this forum isn't immune like most other forums, to feelings running high and misinterpretation, I always step away from social media when I'm feeling very down as for me personally, this doesn't last long and I wouldn't want to share anything I'd likely later regret.

I hope you feel that you can pop on here from time to time.

I wish you well and thank you for your contributions to this board

Xx

kearnan profile image
kearnan in reply to

I do the same. It is upsetting to read that one is having arguments, and does not help anybody. So sometimes I stay away for awhile but am back on now because of progression to my liver and how quickly it grew from one scan to my next in three months. I just wonder what treatments other went on from there, or their reactions to new meds , although I did learn people have different reactions.

I am learning alot on this site also.

That was harsh for someone to say not too post her feelings on dying

Many oeople have this...Sick or not

I myself am 4 months new on this site and the ladies have been nice.

Only one was rude...

I just ignore

Have a Amazig life and and lots of

HUGS AND LUV ❤️

Totheriver profile image
Totheriver

I am so sorry to hear that you are leaving. This sight has been such a huge support to me. I also miss Sandra and will miss you, I also thought some of the comments and thought they were very rude but really hope you will reconsider for all of us who really care❤️

Georgiamjb profile image
Georgiamjb

So sorry hear you’re leaving. Your inspiration and encouragement will be missed! Suzanne

diamags profile image
diamags

I'm sorry to see you go and understand your feelings about this. No good deeds go unpunished.

NShaft profile image
NShaft

You will be sorely missed, along with those who have left us. I found such comfort here when first diagnosed four years ago. I learned so much when things were overwhelming. This is supposed to be a safe space to vent or celebrate. I hate that social media seems have made some think it is ok to be cruel.

AvidBooklover profile image
AvidBooklover

In 1996 my company started with one book site on AOL. We had message boards and chat. We had to have monitors on both...and there were many of them. Every board that I have been on without them loses wonderful contributors like yourself at some point. There is a reason today that at my company we do not have anything that needs to be monitored. It is a lot of work to corral a wide swath of comments. I get where you are coming from!!

Tolife_18 profile image
Tolife_18

I read the posts periodically and respond only when I can help with the specific questions. I post even less trying to cope with my wheelchair bound situation.

And yes, unfortunately, the boards changed a lot with departures of our greatly missed members. Please reconsider leaving! This will only encourage the members who sends nasty responses and personally attacking the long standing members!

We’re here to support each other in the difficult situation we’re. It’s sad that some of us are still finding time and desire to be nasty.

I just wish that admin was more active in blocking those post.

I think I can speak for all by saying we need you!

Whatever you decision is I wish you to many years of stable results and good health.

Polina

in reply to Tolife_18

Hi PolinaNice to see you

Clare

kearnan profile image
kearnan in reply to Tolife_18

I assume that the adms. only block somebody if somebody is insulting to someone. Just because someone has a difference of opinion is not enough reason to block them.

There are some posts on there that I think are a bit too much bc nobody on here is a doctor or an expert just bc we all have mbc. But especially if it is a book or some new article or research, rather than debate what is the point, I just scroll on and do not read it bc I am not interested in that.

Tolife_18 profile image
Tolife_18 in reply to kearnan

I agree, but these days there is so much polarization in the society that spills in these board as well. We need to be kinder to each other.

mariootsi profile image
mariootsi

I will miss you! I wish you well in your treatment and hope for a cure for all of us!

PJBinMI profile image
PJBinMI

I will miss you, too! You have important knowledge (legal) that is often really helpful to alot of us, but you are also a kind and generous person who recognizes alot of the difficulty of living with this lousy cancer. I am the person who started this thread and I want you to know that I have not felt at all hurt by any of the responses here. I have pretty "thick skin," probably from growing up with brothers--I least I like to give them credit, lol. And I grew up with parents who had lived thru the depression and WWII and passed along their sense of responsibility and the importance of community involvement and I started reading the morning newspaper almost every day when I was in the fifth grade. I can easily forget that not everybody views their world as I do. And I certainly didn't mean to start any controversy with my post. I hope nobody here will allow this thread of discussion to get too much under their skin--we're all vulnerable and have so much of our current lives that we just cannot control. I am going to shut up now but do know that you will be missed here!

Bettybuckets profile image
Bettybuckets in reply to PJBinMI

Not your fault so please don’t feel badly!

Roarlion profile image
Roarlion

So sad! I read the post you mentioned. I, too, was discouraged by some of the responses. This forum allows us to write how we feel. We are all on the same journey and each of us will see different scenery along the way but we should all feel safe and supported when we share our views. All of you understand how I feel because you live it! None of my closest friends can begin to know how hard this dx. is to accept. I have never met you Martha’s Vineyard but I know how you struggle and I will walk this path with you. Please reconsider. All of us who use this forum the way it was intended to be used need you!Denise

Lilsusie profile image
Lilsusie

Thank you for all you have done and will continue to do for others. I have been a listener on this board and have learned so much. This board has helped me to cope with MBC and that I can never repay. My prayers are with you as you continue your journey. I will forever be greatful.🙏💕🙏

bracelets1 profile image
bracelets1

I am still relatively new (5 months in) but when I found this forum, I truly found happiness, so much hope and so many answers to questions that I hadn't even thought of.....yet. When I read your post and the responses, I was truly saddened, as I haven't had any direct communications with you, but it sounds like you were a gift that was sent here to help others and I hate that we will lose someone who is so knowledgable and inspirational. I hope you will reconsider, but I also understand you must do what you think is right for you. Many, many blessings!

Juliianne profile image
Juliianne

I have never posted, nor have I commented. I'm sad to see such smart and helpful people leave this site. I too miss Sandra and her expert knowledge. Best of luck and good health to you💕

kearnan profile image
kearnan in reply to Juliianne

I think I may have read some comments from Sandra, but what made her an expert? (Seriously, not being sarcastic but see how I felt I needed to add that) Is she a doctor or oncologist. I would, personally, never take suggestions from someone that is not a doctor. I would take their advice on how to calm down some side effects, etc. I have never taken vitamins in my life even now. I never juice or anything like that. I do not like nor do I eat vegetables. I certainly do not want to read books about cancer. Living it is enough for me.

dnamscg profile image
dnamscg

I totally agree. I too am not sure I want to fight this time to live in this world. The only reason I fight is for my children and grandchildren and my great grandchildren. What will there lives be like with all the hate.

“Why so much drama?”

Why such a sarcastic, flippant question when people have thoughtfully articulate their concerns?

I’m no wallflower. I grew up in a big family with 4 brothers. My legal career gave me a thick skin. It also taught me to push back against unkind people.

Maya Angelou was right. When people show you who they are, believe them.

LadyKatarina profile image
LadyKatarina in reply to

I am so sorry--I did not mean to insult you--or be flippant. Just thought the group might be a bit more open and less judging. I deleted the comment. Thank you.

in reply to LadyKatarina

Thank you. I respect people who can step back, reconsider, and hit what I like to call the “Re-set” button. It says good things about that person. It’s not always easy to do, so all the more credit to you.

Much appreciated.

LadyKatarina profile image
LadyKatarina in reply to

Well, I must admit, I still think I have missed something that has caused you to leave this group. Sorry I called it drama. You are not the first that has announced departure and blamed it on the bad apples with fewer manners. I don't know why you would leave--especially if you have friends here. I must not understand the way this group works. There does seem to be a core who all know each other well. I mostly follow the MBC groups on FaceBook--simple medical/legal/etc. questions and then simple answers. And admins shut down anything that gets off--which would have happened when the off comments started in response to the colleague who shared her fear of dying being the state of the country. Are there any group monitors or admins? I am not sure that would get you to stay! Anyway, the very best to you!

kearnan profile image
kearnan in reply to LadyKatarina

I am not understanding why you felt a need to delete your comment. People should be able to post how they are feeling and we know that can change from day to day. Not everybody is going to love one comments and/or disagree. I personally do not think anyone posts something deliberately to upset others. Some of us have thicker skin, some do not. Some may read something more into it, while others may not.

LadyKatarina profile image
LadyKatarina in reply to kearnan

Thank you! I deleted my comment because I asked "Why so much drama on this board?" and 'Hidden' said I was flippant and sarcastic. I truly do not understand why everyone keeps leaving and blaming it on others comments--and therefore asked for an explanation. But asking that might have looked like it was coming from a place of judgement. Maybe it was! I was hoping everyone would think again and be calm--both the commenters and the ones leaving. We are supposedly here to support each other and share knowledge. Best to you!

kearnan profile image
kearnan in reply to LadyKatarina

I felt the same way as you. I do not come on here every day or even every week. Cancer is a big part of my life but it is not my entire life. I started thinking it was getting out of hand. People taking sides. One may have had a bad day and they may have resolved it themselves. Maybe Sandra just needed a break also. Sometimes people need to do what is best for them.

JoyBe profile image
JoyBe

You will be missed ! Much Love Sue in Virginia

I want to express my appreciation for the many kind comments. I wish the people who sent nice messages well.

Diamags nicely encapsulated my reasons for moving on in her post. Thank you my friend!

I will send private messages to those who reached out so we can stay in touch.

Good luck to all.

Kruza profile image
Kruza in reply to

Don't forget me

Dancer1000 profile image
Dancer1000

I haven't posted in many months and just saw your post. Its truly unfortunate if there are mean comments going around. We all have a right to our own opinion and choice of what type of treatment to seek whether its allopathic, alternative, or a combination of both. However, we should never ever chastise someone for their choice if its different than our own. That is their path, wish them well and move on. I miss some of the folks that were regular when I was posting that have now transitioned. We are all in this cancer journey not by choice and we are all afraid on different levels of what that means. We are suppose to be here to support each other not tear each other down. If anything, this journey should open our eyes to the gift that is life and the importance of treating each other with kindness not only for that person but for ourselves as well. I'm sorry you feel compelled to leave but I totally understand and ultimately you have to do what is right for you. Never got any legal advice from you but I sure wish I could should I need it. At the end of the day, what I have found is that the most important thing is to guard your peace because your life depends on it! If you no longer find peace here than leaving is a wise choice but you will certainly be missed.

Ntash01 profile image
Ntash01

Messages posted on here are very subjective- we as readers imagine tone, style , intension ect and it seems some members have calculated 2+2 and have come up with 10…. We can all have an opinion- it’s fine… it reflects the world we live in - there are big and bigger things happening… that’s life! Even the author of ‘the controversial’ topic gets it (if I read the comment correctly).

This is the second time now we have another long time knowledgeable person leaving, which is fine (everyone’s prerogative) but can people just leave and not announce they are leaving? Let’s cut out the goodbye messages - it’s depressing and leaves a bad taste.

Jo and Barbteeth could not leave a goodbye message - could they? I still thought about them and sent them private messages just to check how they were until I found out they grew wings😔

This forum is fantastic, let’s keep it going for the newbies - they need it. I know how much it means - personally it got me through my first of year MBC and I started to believe I could live with this new normal.

Marthasvinyard - please stay x

N

in reply to Ntash01

If you re-read your post, please reconsider the mixed message it sends about being able to openly share our fears and concerns.

When I explained my decision to leave after careful thought, you responded by acknowledging it is my prerogative.

But .. you then say it is better if folks like me just go away quietly without explaining why we feel the need to leave. Because you think that offering an explanation for leaving “leaves a bad taste.”

After that exchange, you ask that I please stay. Sigh.

I prefer to maintain my own narrative about my MBC travails. I’ve earned that option after dealing with the cancer beast with recurrences over almost 20 years. My MBC diagnosis in 2018 affirmed this right once again for me.

Others deserve the same grace too.

Ntash01 profile image
Ntash01 in reply to

I guess my post could have been seen as a mixed message, and obviously came across in a way I had not intended it to be. Lots of splinters in my derrière!

I asked you to stay as you would be missed by many (messages supporting you and requesting you remain show this).

Its just this is the second time I’ve witnessed on this board in a short space of time someone giving an opinion on a post, then a third person is more offended and decides to leave. Everyone deserves grace you are absolutely right, I just don’t understand your reasons for leaving - why must you leave, why are you offended?

I probably have offended you again now, and truly this is not my intention. All questions are rhetorical, just writing my thoughts down!

‘Bad taste’ was definitely harsh, I will apologise for that…sorry!

Who needs soap operas 😂

Stay Martha :-) give the board another go!

Nx

in reply to Ntash01

Thanks for reconsidering your comments.

You ask why I arrived at this decision. I carefully explained my thought process in my original post. I don’t want to belabor my explanation any more please.

Pbsoup profile image
Pbsoup in reply to Ntash01

Actually, for what it's worth, I think the goodbye messages are fine--even if we don't want people to leave. At least that way we don't worry and assume the worst when someone stops posting?

I still wonder, say, what happened to someone called SophSP who was young and, at last report NED, when she abruptly left after being very active on the board. It makes me worry...Although I decided that perhaps she wanted to spend less time in "cancer land" and just live her life. (Have no idea if that's true though)

I would rather know someone was intentionally leaving--even if it is just because they want a break, not due to anything that upset them, so I won't worry about them. Does that make sense?

We are a community here. And you're right, it IS a fantastic community. And we all do care about each other.

Ntash01 profile image
Ntash01 in reply to Pbsoup

Hello Pbsoup

The last message from SophSP she mentioned that the forum

wasn’t the right place for her anymore as she was doing well. That was an amazing post :-)

in reply to Pbsoup

Sophie is fine.

Pbsoup profile image
Pbsoup in reply to

That’s good to hear! I figured but you never know. Thanks!!!

kearnan profile image
kearnan in reply to Ntash01

I agree with you. One should leave it not happy but if it makes her feel better to state why, then so be it. I just felt like it was reprimanding certain people as to her reason for leaving. Personally, I do not think anyone should be telling anyone else to try certain supplements, or not. But it is up to each person to decide what they want to do and emails can lend a certain tone depending on the person writing or reading it.

Timtam56 profile image
Timtam56

I'm so sad. I have no words.

Kruza profile image
Kruza

Please do not leave, I need your help, I just joined a couple of months ago and trying to navigate work and treatment. Please do not leave, I beg you.

in reply to Kruza

I sent you a PM

Guitarbella profile image
Guitarbella

I am so sorry that you feel you have to leave this board. This wonderful site has given me hope and courage moving forward with MBC, and made me realise I am not alone in my journey. You will be missed , as Sandra is also missed. Wishing you good health and happiness in your journey.

mbogorad profile image
mbogorad

The problem with that message was not a fear of dying, which many of us share. The politics on the other hand are totally inappropriate and disappointing. Hopefully whoever wrote that initial message will keep her political views out of this forum.

in reply to mbogorad

I disagree for all the reasons I and other folks have stated earlier.

No one should criticize a MBC patient for how they absorb and express their fears. If you don’t share her perspective, you can scroll right on by without chastising patients.

The ability to show grace is a loving thing to do.

Pbsoup profile image
Pbsoup in reply to mbogorad

Not sure why I am weighing in, but... what you said touches on a bigger issue about this board so bear with a long answer...

I didn't see her views as "political" per se. To me, political is expressing a strident view like " Democrats are bad" or "Vote for Nixon." What PBJ was expressing, eloquently as always, was remorse about being toward the end of life while the world is in a mess--my sense was she was expressing sadness at not being able to do anything about it. She did reference the 1/6 riots and ongoing hearings--and I think most can admit those riots, conducted by an unruly mob with minority views, were a tragedy beyond politics. Whether you are on one side or another, I think we can all agree that America's democracy is vital,--a key part of what makes our nation resilient and able to weather challenging moments. So when people are swayed by false information, and feel like it's OK to rush violently into the Capital injuring others, destroying property and shouting about "hanging the Vice President" because he won't lie to make what they wish happened, but didn't happen, occur, it us not political, it's ugly.

To me, it is similar to the people who prey on cancer patients with false hope information--"come to our wacky clinic and spend all your life savings on snake oil and you will be cured..." that sort of thing.

Even if you don't agree with my reading of January 6th--and that's your prerogative, I don't think the context PBJ used to express her concern about it was intended as a political statement. I read it as her pointing out an example of something that is upsetting and worrying her--- in the context of her cancer and other health issues. She is entitled to that perspective--why should she need to "keep it to herself"?

I would like to think I would feel the same way about this even if I didn't agree with her.

Is it political if someone here says they don't want to be vaccinated for COVID? I don't agree with that stance, but respect their right to feel that way. I certainly wouldn't tell them to keep it to themselves--and hope that they wouldn't say the same to me if I said how blessed I feel to live in an era when a vaccine can be developed so quickly. (And as much as I do not like the man, President Trump deserves credit for authorizing Project Warp Speed under which it was developed.)

The thing is, we all have a right to express ourselves here, to use this as a place to process thoughts and emotions we can't always share in our offline lives. Yes, the primary topic is and should be cancer, but I don't think what PBJ said was any worse than someone straying slightly off topic to, say, talk about a recent vacation. Some here are afraid to travel right now, but that doesn't mean someone else shouldn't talk about their experience. If someone feels triggered by someone else's good (or bad) fortune, then they don't need to read it.

I hope this makes sense. And that I am not pot stirring. I really just want to defend both the open nature of this board--and one of the wisest and most thoughtful people here.

P

DDIL1 profile image
DDIL1 in reply to Pbsoup

Well said. I re-read the post. I think we are all facing or thinking we could die and we know how we will more than likely. This political state of our country obviously troubled her . The concern if she died what would happen, would democracy be lost. Each of us have things we wonder we won’t see. I wonder if I’ll see my grandkids grow up and what will the world be like for them. What will I miss. I saw the internet become a game changer .. look we can communicate across countries. I think that was her worry I don’t want to speak for her as I don’t know her but that’s what I got out of it. Politics and religion are never agreed upon. But in these emotionally driven moments of our lives, I just listen/ read and offer support. I don’t care what you believe we have cancer and showing compassion and understanding is what we all need. I will just look the other way if something bothers me and I hope everyone on here will not throw knives at each other. We don’t have time for that. We need to be respectful to all. Life is to short for this especially for us.

mbogorad profile image
mbogorad

Everybody here is a patient, and it’s not easy to un-read once you read something. I will also leave this group if members continue bringing in politics.Peace to all.

Oh, gosh, MarthasVinyard! I'm so sad to read this, but of course respect your decision (while also hoping that you change your mind).

I've also sometimes felt...a disconnect?....from the community as the tone has at times turned nasty. But then I'd read posts from some of the *many* good people in the group, which reminded me that the good outweighs the bad. Or it should. But if too many good people leave, what remains?

This group has typically felt very different from most social media, i.e. supportive, etc. but I think that twitter-like behavior has infiltrated to a degree. Quick, troll-y responses expressing people's anger and pettiness. I do hope that, collectively, we can change that.

Be well, take care, and thank you for all of your wisdom and insights over the years...

Lynn

kearnan profile image
kearnan

Everybody is entitled to their opinion. I was off for several months bc personally, for me, I thought it was not a good idea that people were taking some advice and supplements that others were advising that are not oncologists.

Everybody is entitled to their opinion though. A forum board like this cannot be run just as one would hope it would be. Maybe Sandra just also needed a break from others who were relying on her too much. Just because someone was upset and may have gotten a bit "testy" in their response (I really do not know what the drama was all about, I seen it after I came back on and she was gone already).

I just think others should NOT have attacked the person who disagreed with Sandra. They may have been able to sort it out themselves but then other have to jump in and it became us vs. them. Maybe that person was having a bad day or maybe there were days that Sandra was having a bad day. I just try NOT to get involved with picking sides. This is an adult forum board.

It is your choice to leave the board, I just find the reprimanding of others a bit much as to why you are choosing to do so. But like all of us, I wish you the best in your journey and sometimes taking a break from this board is needed.

jersey-jazz profile image
jersey-jazz

Dear Hidden---God bless!I wish you peace and a good a health as can be expected. Interestingly, totally as a result of joining this mystical, magical, spiritual, loving, knowledgeable confluence of Metastatic Breast Cancerers, I have been awarded confidence in the discussions I make about my health and been given a new lease on life. That is such a hackneyed phrase but it suits so well. Thank you to all you beautiful people!

jersey-jazz profile image
jersey-jazz

The reply I just sent does not seem to have been recorded here. I will repeat myself as best as I can. Dear Hidden----God Bless!------I wish you peace and good health. I want to say how much this mystical, magical, reverent, loving, caring, knowledgeable forum has given me. It has shored me up to have confidence in my decisions about my own health and has given me a new lease on life, a hackneyed phrase but a true one. Thank you, all of you wonderful people on this forum.Frances

Dflur profile image
Dflur

I’m sorry. I am not sure what comments were made. I scroll to comment’s that apply to me or friends and family with cancer. I don’t share any belief in judging or unkindness or selfishness… This is a life support thread.💕

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