I'm old enough to know myself pretty well. I'm opinionated and can be quite harsh in an attempt to be direct. Knowing this, I try to take some time before responding to anything upsetting. I've taken a week on this one, and I think I'm even more upset now then when I first read the post. Rather than responding in the thread, I've elected to write a separate post. Thanks for indulging me.
The loss of Sandra to this board is devastating. I know for me personally, she provided more detailed, study-supported, thoughtful information than my MO. Her depth of compassion and ability to relate to our situation was invaluable. Her willingness to always be available to us when middle-of-the-night fears crept up was nothing short of heroic in my book.
During my latest round of bad news, I went on one of those trips down the Google rabbit hole. I was searching for anything that would keep me from chemo. Sandra patiently reassured me, provided me excellent, peer-reviewed information AND guided me back to the reality of science which we must all live with...like it or not.
I think many of us (and our loved ones) are prone to panic and to turn over some questionable rocks looking for an answer. I think our partners are sometimes even more zealous than we are in their quest to fix things. If left to our own devices and the internet we could do some very real damage. With stakes this high, thank goodness there are those who will say, "You really need to look into that further." Luckily we HAD Sandra for that. She would steer us back to safety. Most of us appreciated the value of her guidance and appreciated her singular motive of keeping us safe.
As we know, a recent exchange took her from the board. No one can blame her. She spent COUNTLESS hours coaching us, knowing us, caring for us and then to have her motives questioned. I certainly get it, and I'm so very sorry she was treated with disrespect.
Some of us will be able to reach out to Sandra through DM and are fortunate. Those who will not know her or not even be able to search her posts (as I did almost daily) have lost a tremendous resource in this awful journey. I'm so sorry for them.
One last thought. My partner is a very accomplished, widely-published critical care physician with a heart bigger than his brain (and that's great big!) I once saw him stay on the phone for over an hour sitting on a display bed at Bed Bath and Beyond with a worried patient. All of our friends call him for free medical advice, and I see him try to straddle the line between professionalism/ethics and kindness/compassion. I would share Sandra's posts with him, and he would marvel at how well she did what he has struggled his entire career to do. Sandra is exceptional, and it is a damn shame we lost her. So very upsetting.
Thanks for the indulgence. Andi
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Arisgram
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Hi Andi,I feel just the same. Sandra has been so good to me. My onc just spends 10 minutes every 3 months. I often don't get the opportunity to ask anything and often get strange answers.
Sandra is so good at explaining things and at making me feel better.
Lovely thoughts Andi. Your partner sounds amazing by the way.
I see this situation slightly differently. I read the exchange in real time, and while I thought the person questioning came accords as obnoxious and rude, it was also clear it came from a place of frustrated desperation for his newly diagnosed wife. Not appropriate but understandable.
When Sandra responded the way she did, I was surprised. It seemed uncharacteristically rash just because one person was a dolt. This led me to wonder if it was less about that one post than being emotionally exhausted by all of this. Even if on a subconscious level.
We all looked to Sandra for guidance and advice, which she gave freely, over and over, all the while dealing with the same shit we are. I wonder if it just got to be too much. I know some people on this board have become like friends to her, but most of us are strangers. She gave and gave and gave anyway. Not just off the cuff advice, but like you said Andi, she would seek out articles and information. It must have taken hours of her time.
I was surprised at first that she didn’t just let the person’s comments roll off her back. Like I said, they were rude, but so clearly from a place of pain— He was clearly down a rabbit hole. Was he a jerk? Yes. But then he apologized and it seemed sincere. Like in life, not everyone on here is my favorite person, but we’re all doing our best in horrible circumstances. (I stood up for someone the other day and caused a rude person to leave the board. I think it went unnoticed though. It wasn’t about cancer but COVID vaccines.)
Anyway I wonder if this isolated incident wasn’t the real catalyst for Sandra leaving. I wonder instead if it was the proverbial straw that broke the camels back, and she simply needs some time and space for her own healing, and to nurture relationships she has in real life, rather than to be so continually giving to a group of women she doesn’t really “know” (other than a few of course )
I tend to be a “giver” too, like many of us. Recently I have been wondering if the compulsive giving out is like a misguided deal I strike with the universe—if I give and give, then I can avoid looking inward to face the realities of my own situation. I’m not saying that’s Sandra—she is pretty realistic. Even so it can get exhausting just when we need emotional resources.
Thanks for your insight, and yes, I understand that the jerky response was coming from concern for his wife. However, it cost everyone. Straw or not.
I don't know what Sandra was going through that day. Hell, I'll bite you're head off if you ask me about the weather half the time. If Sandra had reached her tipping point and needed to step away for whatever reason, then more power to her! I'm always on her side.
I agree with you…. To be fair I did not read the thread nor am I gonna go back and read it because as you said lots of things we say and do at this point in our lives is from a place of pain and fear but I do think it was not just that one comment that had her leave Sandra has offered me advice as well that Helped me in a time of need however that can be taxing on someone and when you’re dealing with the same disease and pain and fear all can be too much sometimes and sometimes you have to back away I hope she’s getting the care she needs and I miss her on this thread as well. ❤️
I agree 100% and I am going to throw this out there before I retreat but...perhaps there should be a separate board for spouses/caregivers - please no offense to those who are here now. This is just an observation. Please dont yell at me
I have thought that too from time to time. It’s a tough one.
Or maybe we at least need a sticky post at the top with group norms. Simple rules we all abide by—be kind could be number one. So could “don’t over post” and “it’s ok to disagree, but do it with respect and curiosity. “
I am relatively new to this chat board, and I too wondered why there are spouses in this group. I am also in numerous FaceBook groups, and only the person with MBC can join the group, not family members. That would not fix your recent problem, however, but I think it is a good idea. Kay
Maybe because his wife is not well enough to ask these type of questions. I do not come here often bc sometimes I noticed people giving other people advice on what supplements they should be taking, etc. I thought some people were stepping over the line and others were more willing to do what they heard or read on this board then talking with their medical team.
I do not get the big thing about allowing spouses on here if their partner does not feel comfortable doing so. Just like some people would go off if they found somebody that was a stage iii on here.
I couldn't agree with you more on this. Kind of like AA. We are dealing first hand with the disease. It is a way different place than a spouse or partner or children, etc.
I totally agree with you and think you express the situation very well and fairly too.
Sandra has put an amazing amount of time and effort into her responses to us and unfortunately that was taken out of context with the person/reaction discussed.
Although I wish them both all the best (not wanting to stir things up again) and understand they made their peace.
Oh dear. Sorry. Sandra is a member of the board. She was working as an oncology nurse when dx de novo three or four years ago. She has been incredibly helpful and supportive to other members.
Wow.. Such kindhearted, understanding and nice ladies on this thread.(Saracism) Seriously being called a Dolt, Jerk ect.. all because I asked folks a simple question and their thoughts about a B17 supplement... I still get PMs from those that matter and help me tremendously. I reached out for help and guidance thru this scary situation my wife and my young Family are facing. Also mentioning Spouses should be in a separate group. Im flabbergasted honestly. I think I should've stayed off of here as I originally planned, FYI the Sun doesnt rise and set on Sandra's opinion, yes she was knowledgeable but so arent other ladies on here. Sandra and I smooothed things over and I thought that was that. Like I said there are other very knowledgeable ladies who PM me with great advice but its obvious Arisgram and few others wanted to continue stirring the Pot. So Im not sticking around this place. I will PM my email to those I correspond with the rest... Take care and Goodbye!
Glad you are getting the support you need. No one wants anything but the best for your wife and family. I think you missed the point of my post. Your interaction and resolution with Sandra is between the two of you. I do hate it that she felt the need to become "read only," but that is her prerogative. She is a mature and infinitely capable woman who can certainly handle her own relationships.
My issue is what the exchange ended up taking from ME and others who would benefit if Sandra were comfortable continuing to participate. It is MY prerogative to "stir the pot" should I choose if it impacts ME, which it does. Regarding where the sun sets, you have your opinion, and I have mine.
Again, so glad you've found helpful support and will continue to participate via private messaging. All the best, Andi
And for my part, I said you were behaving badly—and it’s true you were quite rude to Sandra, and that was arguably doltish behavior …but I hope I was clear that while rudeness is not acceptable, it was understandable given your level of concern. And I realize you made peace with Sandra.
I wish you, your wife and children all be best. It is a horrid situation to find yourself in.
Not sure why other adults on this board needed to get themselves involved and make things worse than they seem. To go and call another person names does not help the situation. This is why I don't come on often. We all have bad days some times and I doubt that was the only reason Sandra left the board.
You state "rudeness is not acceptable" and yet you referred to his "arguably doltish behavior".
People should step back and let the person or persons who have a "disagreement" on this board work it out themselves rather than people putting in their two cents.
Not sure why I am responding as the dust has settled and everyone has moved on... but... as I explained elsewhere I wasn't calling "him" names, I was calling out his bad behavior--I saw the original post and he was indeed quite rude to Sandra, and subsequently to others. A lot of women were very upset by the upshot of his actions--and said as much.
I agree that Sandra likely left for a myriad of reasons, but this seemed to be a tipping point. Should I have stayed out of it? Perhaps.
Anyway as I said above, the dust has settled so I think it's best leaving it for now?
I think that for the most part, everyone on here is very kind and respectful ,so I hope you don't feel you need to stay away.
To each his own as I seen somebody else refer to her reply as rude to the poster. I just saw there was some type of disagreement when I came back on, and thought oh no and then remembered why I stayed away for a while.
I just think they both would have settled it themselves without others getting involved. Either way, I doubt that was the main reason she left. It may have just been the final straw that broke her back. All I am suggesting is that others should not get involved and let who is arguing figure it out and more than likely, they will resolve it themselves. I myself can get rude to a friend bc I am having more pain than usual and my friend will reply back the same bc she will be hurt. I then realize the next day I was wrong and apologized and we just go on.
Sorry (not sorry), but I think your response says it all. No humility, no empathy, no apology, no understanding of what you have done that has upset so very many on this forum, not just Sandra. I hope for the sake of your wife and family (and the rest of us) you find a better way to manage your anxieties and your need to dive down every rabbit hole. We've probably all done that too but with more grace and without distressing all of us who have to manage this condition every day of our lives.
He is hurt. I can tell by his response. Maybe, like I mentioned, if others would keep out of a disagreement and let the two people settle it themselves, this would not have become a bigger deal than it was. But no, people have to jump on one person and take sides. That is childish behavior.
Your remark just makes a bad situation worse. I find your reply to be very rude actually. But it's a reminder of why I don't come on here often.
I can't believe the board allowed the name calling...jerk dolt etc. You are very worried and reached out.We don't always react the way we should but we all are stressed. Kindness should be given or at least thought of before reacting. I am a nurse of 40 years and know a lot but am very careful of advice..I like to suggest links but it's hard every oncologist treats different and the board is a great place for advice of symptoms or references. We are in the same boat.
Thanks Mcangel11 In my post at least I was referring to his behavior as doltish, not the person. I was clear that I understood it was from a place of pain.
Sandra was direct with him about an alternative treatment for his wife, as was her way as she is not a fan of alternative protocols. She meant well, but he misinterpreted her tone and responded very defensively and rudely.
I also pointed out that he apologized.
And like I said, without knowing this directly from her my spidey sense is this was just a contributing factor, not the sole reason she left.
Maybe I’m being defensive now, but I would never call someone names. I was labeling the behavior—with context. Happy to remove my post if it sounds offensive.
No worries been dealing with cancer since age 37 and now 60 with stage 4..I get that it's frustrating and we all are in different treatments...let's support each other and you have the right to speak your opinion.The world sucks right now and together is better.
Though I do not know what the big argument was about, I do feel that others that called you or whoever they were referring to as a "dolt" or whatever was not appropriate. This is not a teen forum board. Sometimes it seems some people take more advice from here than they do their own medical team. People should be able to post here, whether they be a caretaker or the person who has the disease.
I doubt Sandra left because of this one remark. She may have added stress on her and too many people relying or asking her for assistance and she just needed a break. That is why I do not come on here often, because sometimes there are a few that seem to think they are in charge. We all have bad days and write or say things we regret. He did apologize so others should not be calling anyone names like that. Just say a prayer for Sandra and I think she may be back when she feels it is the right time for her.
I would think eventually Sandra may return. I do not ask what I should do, I do like to know if others experienced the same type of reactions or whatever with certain meds.
You wrote that better than I could have but my word you are correct. We will miss Sandra. I think the exact same things. As a partner, you made me chuckle with "trying to fix it" as that's exactly what I do! Sandra was exactly what you said, just a fantastic resource. She will be missed. The disrespectful behaviour has caused us all a further loss in a sea of loss, fear and unhappiness. X ❤️
I am following the discussion about Sandra and it is obvious that we will all miss her more and more. I haven't been able to read her past posts and replies so please kindly let me know where to find it? Is it possible to send Sandra a private message? I think Sandra was happy when she could help us with advice and maybe she will do so in the future.
I agree, I'd love to know this too. I can't even remember her user name to look up
I am only a recent member of the board. I would love to have access to Sandra's calm and wise advice, previously given. In the five months I have been on here I could see her posts were so full of knowledge, and from a perspective rooted in common sense and compassion.
It is a real pity she is not contributing any more. But she needs to put herself first. It is probably a weight off her mind, not worrying about all these strangers
I agree. I didn't see what prompted her to leave. No doubt people in our condition get upset and angry and vent their frustrations sometimes. Maybe she'll come back some time. I do have message contact as she has reached out to me personally. Carolyn x
Hi Beryl- I too loved her advice. I was busy moving house snd so stepped away from looking here and missed the recent discussion which led to Sandra leaving . Do you mind please reminding me,What was her other name as I did have many conversations but have a memory problem so can’t connect Sandra with her other name.
I totally agree with you. Sandra has helped me so much in year 1 of the journey and I feel a bit deflated looking through the posts and she is not here, especially in the circumstances surrounding her feeling the need to leave which I do understand but sad she had to take a back seat. TBH I still feel angry and I feel it’s a bit much that someone comes on and upsets the forum and so many people and provokes people into anger and disappointment, we have enough to deal with don’t we .? We can do without it. We need Sandra. I hope she reconsiders at some point but if she doesn’t I totally understand as she doesn’t need it too with MBC to deal with personally on a day to day basis.
Hope everyone has a good day. Sun is shining in UK hurrah
Well said Debra, I too have been on this forum for the past year, and have valued Sandra’s input and knowledge. It doesn’t feel the same without her. Xx
He did not upset the forum board. It appears other jumping in for Sandra, just made things worse. It was everybody else getting involved that made a situation that would have resolved into a bigger deal than it needed to be.
Hi Andi,I totally agree with you and PBSoup. I really hope we hear from Sandra again in the future when she feels a bit better as I, like so many of us, found her input enormously valuable and reassuring and I feel her loss keenly. But I also understand that the gentleman involved is going through a horrible time as well and wish his family the best.
I am fairly new to this site but I did see the exchange that happened. As someone who is not emotionally connected to S I found her reply to the poster rude and condescending. Why? I couldn’t say. I am surprised, being a nurse myself, that the husbands behavior was so upsetting, this to me is not unexpected during a crisis and has happened to me often in my practice. As others have stated, maybe there is a situation on the other end as well . This site should be for information and encouragement, not all this drama. I can watch the Housewives if I need to listen to continual pot stirring. I’m sure I will be flamed for this but just had to voice my opinion.
I agree. I have been a member of this site for about three years now, but then I stopped bc I see what I considered petty behavior, and the ones who always played the victim. But there are some very nice people on this board also. I just realized it was not good for me to come on here often. And then I did after a long break off, and right away this was some kind of drama with Sandra that I did not know what happened or what was said and thought Oh well, things have not changed.
Some give some people too much power as to taking what they say for fact. Being a nurse does not make one an expert as we all have totally different stages that we are in, meds, health, etc.
Then again, I do not keep track of whatever numbers some do (I forgot what they call them..oh, some kind of markers). Never been told what they are and here I am in my fifth year. I eat sugar, and basically whatever I wanted. I do not do smoothies or supplements and I would NEVER read a book about cancer unless I needed help to fall asleep. But for some, it makes them feel better to be a bit in control of their own situation.
Maybe next time if two people disagree, others should just stay out of it and do not add more fuel to the fire.
Reading this post and responses were quite painful. I came here for the encouragement, information and compassion. I didn’t come here for drama and finger pointing. Right or wrong we’re in the same MBC boat which make us and our families emotional and anxious. I hope that we and our husbands/partners/family can recognize that and seek help. There is no shame in it. Stress, anxiety and depression comes often when facing this terminal and debilitating disease. Asking people just being kind may not be enough.
I think you all are playing the blame game, and as Threadsgirl said above, continuing the drama. I had been volunteering at a very time consuming job when I was diagnosed, and it took a "straw" to finally get me to resign. That happens, and sometimes needs to happen. And it is very hard, because when we get this disease we feel so totally helpless, it changes our lives in huge ways, and we need to find things that help us feel worth something, like we did before becoming ill. I think you all should give both Sandra and the worried husband a break and be more understanding. They need support, not being blamed. In the FaceBook groups there are admins that would have shut down this type of conversation long ago. However, maybe we can all learn something from it. Healing the soul and spirit are just as important as healing the body. I wish you all the best, and peace in your (our) totally upturned lives. Kay
As a MBC survivor, I feel other patients themselves should be posting not their “miny mes”. I’ve seen some crazy posts on this site that are inappropriate so assume no editorials are made? I do appreciate the help we can provide each other with this life threatening disease. Whether symptom relief advice or emotional support this forum is important for me.
Andi, I feel exactly the same as you. You captured exactly who Sandra was to (it seems) all of us except one. I really miss her, but understand her not wanting to be attacked for just being kind and thoughtful.
Wonderful heart inspired post - from all the ladies. Sandra is a blessing. I’d like to DM her as I was always respectful to stay between my lane but do need to reach out. Blessings ! Julia
All who attacked, and yes, you attacked...don't try to put a pretty bow on it...you should be ashamed of yourselves. This man was reaching out for encouragement and hope. Who are any of us to slap away the hand that reaches out for help?! We've all suffered and had anxiety...and still do! Don't we all want and need compassion, hope and understanding?? I realize its not the majority of ladies who got involved here...but those that did, should have been reviewed by the board.
Amen. Glad that there are others like you that I agree with 100%. People need to stay out of things on this board that do not involved them if there is a disagreement. From what I am reading, apparently he apologized to Sandra and she accepted and yet still you have the "Sandra fans" on here making remarks.
I totally agree with you Andi .I hope she comes back to the group , she gives so much of herself to all of us . I feel selfish for wanting her back in the group so bad as I am sure she has other things to do with her precious time. I hope that bicycle of hers is zipping around Alberta .
I believe (my opinion) peeps should not have jumped on this bandwagon!!Feelings were aired and responses were misunderstood. One side apologised, the other accepted… so why get involved and dredge this ‘old news’ up again?
I agree with previous messages that perhaps Sandra had enough of giving and this was the perfect time to walk away until the time was right for her to return. She welcomed private messages - so private message her! Perhaps she was just tired being the centre of all posts.
I benefited immensely from her knowledge and I miss her presence, can this really be about just one persons comment? 🤷🏽♀️
I know one missing comma, one unsuitable word can change a sentence, BUT
can WE all remember that we are all up against more than just MBC, we need to be kinder - words cut like a knife… no one would choose to be part of this forum, not at all😔but boy do we ALL need it.
Andi, I agree so much with everything you said. Sandra was a great resource for so many of us. I know how much I appreciated her insights and knowledge. I must admit your husband sounds like a wonderful person. Thank you so much for posting.Blessings,
Andi,I agree with your post. Sandra and I joined around the same time. Even though we’ve never met I feel I’ve known her for a very long time. It’s a long distance friendship. We’ve shared the ups and downs of this disease. We’ve grieved for the friends on this board who have gone before us. I have found helpful information on this board but I have also found encouragement. I have enjoyed seeing pictures of grand children, landscapes, party cakes, and flowers. I just feel a bond with the ladies on this board. I’m sorry this happened. I hope that she will interact with us again soon. I am one of her biggest supporters. Hugs to you Sandra. Thanks for your post Andi.
Andi - what you stated could not have been said any better. Thank you for posting what so many of us could not put into words. Sandra is truly a blessing to all of us. And, you are blessed to have such a wonderful partner.
I only occasionally come on here but I read there was a misunderstanding. We cannot blame anybody if we were not directly involved. Maybe she needs to step away from the board for a while. But nobody should get offended because pain and stress can make us type something that can be misconstrued bc it is in printed form as opposed to tone of voice and facial expressions. She may eventually come back.
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