Supporting Each Other

hi rabbit! What a kind and thoughtful post!

I feel so supported on these boards. I’m incredibly grateful that I found this online space to ask questions and to provide help where and when I am able.

Did you have anything in mind? Like a blogpost you could send people to?

Oops, adding two things.

One is that we have a lot more people on this forum than post. A large number of lurkers. They, I hope, feel supported by some of the posts even if they don't name themselves.

And two, this is an awesome idea and an awesome thread. I look forward to insights from others.

Rabbit, Thanks for starting this thread. I too have a hard time figuring out what to say most of the time. I find it comforting to be able to talk about various topics on this site that are taboo to most people. There is no way I could talk about death and dying with my close friends, yet here we can have a meaningful discussion and everyone understands.

https://nancyspoint.com/four-things-not-to-say-to-someone-whos-grieving-or-recently-diagnosed-with-cancer/I

I am thrilled to have found the BCO site as well as this topic. The support and knowledge I have found here has helped me greatly. I am in a quandary about how to support people. For myself, I would like people to recognize my diagnosis, but not to dwell on it. Occasionally asking me if things are going well is enough to let me know they are thinking about me. Because MBC is such a long term situation, it is difficult for people to be always offering support. I follow Nancy’s Point blog. Above is a link to the post this week. I thought it presented this topic well.

Thanks again to all of you that have offered support and continue to listen. Knowing you are in the same place and can offer kindness through that is wonderful.

Rabbit, I wanted to address your story about talking to the woman with stage iv cancer, how you felt inadequate in offering your support, and how that's stayed with you.

I seem to be the type of person that complete strangers confide in. I readily accept that and listen and hope I can offer some kind of compassionate response.

Here's what's helped me: Some time ago, I read about a doctor who had great medical expertise but grappled with, in the short period of time he had to spend with his patients, how to emotionally address the tremendous difficulties some of them were going through. After much research, he developed a set of several questions that he could ask that made the patients feel like they could tell their stories and were being heard by their physician.

I've used one or more of these questions many times when talking to people I know, as well as complete strangers, who are ill, or whose loved one is ill or has just passed or even if they're experiencing other difficulties such as divorce or job loss.

Sometimes you can just start by asking, "What happened?"

After getting a response, you can follow up with "How do you feel about this now?"

Another question to ask is "What troubles you the most now?" People have many worries—their family, their finances, the not knowing—and it helps for them to give voice to what those worries are.

A final question would be "What helps you the most to handle this?"

After hearing what they have to say, you can offer words of condolence such as "I'm sorry and sad this happened to you." or "I'm sorry for your loss."

I'll ask one or more of these questions as seems appropriate, and I may word them differently, like "What's helping you most?" or "What are the biggest concerns?" "What's the hardest part of this?" “What's helping you get through this?" My experience has found people appreciate being asked.

Sometimes I preface questions by saying, "If you don't mind my asking...." and generally, if someone starts out spilling their guts to you, they don't mind a few compassionate questions. I find people need to talk and just want someone to listen, not fix anything.

Sometimes in parting I give people a hug—not a big bear hug but lightly around the shoulders or even just lightly and briefly laying a hand on their forearm and saying “you'll be in my thoughts." Often people need the human touch. I am not invasive and go with my gut on whether I think they will be receptive to it.

I think that there are many ways of offering support, and different people may be talented in different areas. All these things make me feel supported: Having someone share their knowledge, experience, or advice to help me with my own decisions or management of side effects. Having someone ask how I am or send their good wishes. And most important to me, having someone show that they get it, they understand, they commiserate. This makes me feel less lonely and more connected. To talk to others who are living the stage iv life, to share feelings and life hacks, is essential to my well-being. Where else can we share so honestly? I feel the invisible ties to my sisters here, and I know you guys are always here whenever I need you. It makes me feel good and gives meaning to my day when I am able to support someone else. We are all in this together. And I wouldn’t worry too much about saying just the right thing. The good intention shines through even the imperfect response.

You asked, “What kind of support is most needed and appreciated during an initial dx, how do we respond to each other when progression is involved, what about when hospice becomes involved?” For me, when newly diagnosed I just needed to know I might still live a pretty normal life for quite a while, while acknowledging the real fear and seriousness of the diagnosis. With progression, I especially valued commiseration and ideas. For hospice, I am not there yet but I felt with my friend that I could offer to hear her without flinching or turning away. To just be present with her. Sometimes all you need to say is “I am with you.”

I like that there are different threads here so I can go to the ones with the kind of support that is right at the moment.

Shetland and Sondra, your posts are beautiful and you make so many good points. The invisible ties we have with one another, how sharing our experiences to help others is in fact meaningful to us, being with others who understand without having to explain the extraneous stuff. Being able to address concerns on our own time and then puttin it away, and how different threads support us at the right movement. All very well said.

I went to an in person support group once years ago and I didn’t hate it, but scheduling it in doesn’t work for me. Having this forum available when I need it works best for me. Like you, Rabbit, I also would feel like that spotlight is on me as a stage iv person which makes me cringe even thinking about it.

On another topic, you mentioned how do we support those who choose to stop or refuse treatment. First, I will clarify that I believe women with lesser stage bc should get treatment, I don’t support the “alternative only” approach of refusing any treatment. Too risky at that point.

But when the situation is a woman, or man, with metastatic breast cancer who’s tried different treatment and they’ve reached a point where the disease, and also further treatment, is beginning to take a severe toll on their quality of life, there are choices to be made. I’m not here to judge anyone, only to offer support for the choices they make. I respect that we are all adult enough to make our own decisions. We mostly know one another via the internet so there are still many aspects of each others’ lives we aren’t privy to, so how can we judge? Acknowledge that an individual knows their set of circumstances better than anyone else and can make informed choices specific to what they are going through.

When others share their end times with us, difficult as it is for them, and it’s even difficult to put that down in words, but as their lives wind down and they share with us, we learn from them. There’s an admiration I feel for those women.

I have to be honest, but I have never really found that this board was very supportive. Occasionally I will pop in here to ask a question, but I've never really been able to create any type of relationship with anyone - though I've tried. I just marked my fourth anniversary of being diagnosed de novo stage IV with extensive mets. Fortunately, I have HER2+ so I have been receiving Herceptin an Perjeta every three weeks (had chemo and radiation in the beginning). I still work full-time, take care of a large, very old house and enjoy my quiet time reading or with my critters. My husband passed away suddenly the night that I had surgery to implant a plate in my weakened femur.

When I tell people about my diagnosis, so many are awestruck because I don't look like a "cancer" patient. Anyway, I am thrilled to have passed the four year mark with no recurrence at all - science rocks!

I wish everyone great health!

Nancy

Nancy, I am very interested to know if you can say what would have a made you feel supported, that did not happen. OP Rabbit asked how we can better support each other, so it would be really helpful to hear.

SP (Another one who “looks good!”)

Hi All,

Interesting discussion. Nancy, I too am sorry that you have not felt supported on the site although I can understand where you are coming from somewhat. There are a lot of parallels in our stories. I'm more or less on my own (no children or spouse but live with my mother who will be turning 89 in less than two months), have a dog, work full time and own a large, old house (which I always joke keeps me busy and poor). I was re-diagnosed in my mid 50's so don't feel ready to retire just yet. And for the most part, other than my latest struggles with Verzenio, I have felt pretty great and most would never know that I have ongoing treatment.

I have found this site a god send in terms of being able to talk to those who are facing similar treatments and challenges. When I was first diagnosed as stage IV I received amazing support from others who reassured me that Dr. Google was WRONG in terms of survival stats with pleural effusion. That, and time, allowed me to relax a bit, getting me to a place where I can accept that while my life will likely be shorter, today I am doing well so enjoy.

One of the challenges I have experienced on this board is that, as my time as stage IV stretched, I have lost many of the relationships that I built in those early days. It's unfortunately one of the sad but unavoidable truths with this diagnosis. Some very familiar faces, who I grew to admire and care for, lost their battles. Fortunately there are others who remain that I feel strongly connected to and some friendships that I hope will endure for a very long time.

Divine, I haven't participated in Facebook groups but have heard others express similar concerns. Once and awhile threads on the BCO site can get a bit heated but, thanks to the moderators, we mostly stay on track and remain supportive and kind. (And when things go sideways I just try not to engage.)

Rabbit, in terms of support, there are no easy answers. Everyone comes to BCO at a different place. What is supportive to one may not be to another. I just try to read the posts carefully and respond when I feel I have a shared experience or information I can provide which may be helpful. I'm sure I don't get it right all the time but hope that folks realize it is coming from a good place. And if I see someone whose post is going unanswered I try to loop back to their question or comment. Most importantly, I try to support and acknowledge the differing opinions - what works for one is not necessarily going to work for someone else.

As I said, it's not always easy. As you mentioned, there are times when finding the words is just so difficult. A virtual hug always works for me.