MBC retreats

[troutgal]

If you have been on a retreat for MBC patients, what did you find most enjoyable, most valuable and would you do it again?

[Bettybuckets]

I haven’t been on one but I did go on a retreat when first diagnosed and there was one MBC in the group of us silly under 50 women… we loved showing off our nipple tattoos and just normalizing having cancer… but we didn’t know what to say to the one women who had MBC… now I would understand and pull ER in to be silly with us! If you are planning a MBC event… try to incorporate some silliness. That was the best part of all being together.

[troutgal in reply to Bettybuckets]

Bettybuckets - thanks for the note on silliness. I am not actively planning one but maybe put together a "retreat for one" or a few that could be done in each of our locals but include certain activities...maybe share in early evening zoom. Sort of a virtual "around the campfire " sharing.

[Adamskd1 in reply to troutgal]

If you are looking for a Zoom - MBC lead Support Group go to:us02web.zoom.us/meeting/reg...

Also here is a lively podcast you may like:

ourmbclife.org/episodes

[fancydog]

Will be following, in the past I have not wanted to take a space because others were sicker than me but at 9 ys out now, I have applied for a couple of these "Casting for Recovery" and "Little Pink Houses of Hope". I now have a younger friend who has MBC and she has never travelled very much and she got to join an "MBC Travelers Group" 50 Metastatic women who went to the Florida Keys and she had one more great time!!

[troutgal in reply to fancydog]

Fancydog - thanks. Definitely keep applying. I went on a casting for recovery retreat and got very supportive and involved with them. My email address makes reference to cfr.Do follow and let me know if you get to go and what your experience is. I will be 75 and I know some retreats are age specific.

[anonmbc in reply to fancydog]

I also went to a casting for recovery retreat over 10 years ago. They now have a few retreats specifically for MBC patients in specific geographic areas, in addition to their regular state programs which are now nationwide. I found the retreat wonderful, and I still fly fish, and also made sure that my husband learned how. He finds that it totally relieves the stress he feels due to my MBC as well as his daughter's CML.

[fancydog]

LOL Troutgal! I thought there was something fishy about your handle. When I was diagnosed MBC in 2014, a gal I went to church with who had MBC asked if I would like to attend a Conference that was only about 75 miles from us put on by the MCBN, on the way I learned she was part of a group that had all been treated at CTCA's at some point. Suddenly I found myself in a group of 30 women with MBC, it was so great getting to know these women from many different places in the US and being silly, funny, yet concerned about each other. We had our own FB group named"our Happy Place", and matching T shirts. I made friends with many of these people, call on the telephone types of friendships but alas as of this date there are only 2 of us still living from that original group of 30. Me and the other person is an MD.

[troutgal in reply to fancydog]

Fancydog- that sounds like some great experiences and so glad you have good fun memories. I'm in Ohio. 2 out of 30...you are hearty ! Keep following, I think this may evolve into something. In the meantime, " my happy place = here & now "

[LDR1 in reply to fancydog]

Dear Fancydog, your story went from heartwarming to heartbreaking (at least for me reading it) as so many of those lovely women are gone. I’m curious if that has affected your thoughts about developing close friendships with others with MBC. The three in-person friendships I’ve had with women with MBC were profound, nourishing and unforgettable and I feel fortunate to have known these radiant beings. But all three are gone now, a stark reminder of where this journey leads, and I find myself a bit hesitant to form more connections. Although I know it would be mutually beneficial in the near term, I dread the eventual loss …. curious how others feel about this.

[fancydog in reply to LDR1]

For a little while after the passing of the core of our Happy Place, I'll just say I did not put forth the effort to become close to other Metastatic women for a while. I attend a large church and got to know very well 2 women with MBC, who had been diagnosed before me, they knew so much more than me and did not let MBC affect their devotion to God. They were great examples of God's love for us, I visited them in the hospital and attended both of their funerals. Yes, I grieved their loss because that is what you do when you love someone. I went through a period of not seeking closeness but am back at it!! I've ask God repeatedly what he wants me to do given that I've hit that 9 yr mark and functioning pretty well, its natural that he wants me to be an encourager and offer hope to newly diagnosed MBC. LOL, my treatment center nurses and my Onc encouraged a meet up w/o breaking HIPPA with a younger gal they realized we lived close to each other and had both been RNs. Finally I figured out who she was and we scheduled a lunch meet up, and 4 hrs later we had to end our lunch. We are pretty close buds now and keep in touch via texts. I also have become part of a Cancer Ministry offered at the church, all the members of this ministry have had cancer of of some type, I am the only one Metastatic.

[Bettybuckets in reply to fancydog]

what wonderful support that must have been!

[Bettybuckets in reply to fancydog]

that sounds wonderful! I was at a retreat in MD with weekend and run by too long times.. Lillie Shockney, Judy Mathew’s and Judy Och. Might be from your group. Amazing women. I will write more about it.

[NPmary]

Love your happy place motto - l will be quoting you in my journal. 🌺❤️🌺

[troutgal in reply to NPmary]

Glad you like it . I say it /think it often

[troutgal]

It's a good one

[pollymacchili]

I participated in an Komen/ Orvis sponsored Casting to Recovery 3-day weekend in Vermont shortly after being dx with MBC in 2019. Best takeaways: Bonk on the head #1: I am not alone on this journey; bonk #2 : my fellow travelers were also scared, funny, warm and welcoming; bonk #3 I left with plenty of take it or leave it practical advice, similar experience stories and great self care ideas. And I did not catch any fish but I landed a boatload of friends. I would do it again.

Best parts: small group overall 20? or so. Short (30-60 minutes per) activity segments; delicious food, comfy queen beds 2 to a room, with private bathrooms, wholesome snacks and drinks available 24/7; planned "down time", navigators and BC caregivers on hand 24/7, several small "semi private spaces" scattered throughout the facility's outdoors and indoors for time out moments as needed, built in sessions encouraging BRIEF and optional "my story telling", other sessions for silliness, easy crafts, easy yoga, breathing lessons and laughter. One on one time, on a picture perfect mountain stream, with a veteran fly "fisherperson" on a sunny day...topped off with a shopping session at the Orvis flagship store...who could ask for more?

[troutgal in reply to pollymacchili]

Pollymacchili - thanks for your detailed response. I could relate...used to live in Central Massachusetts. Manchester VT was a wonderful retreat for me. Often went fishing on the Battenkill and the Orvis shop is a delight! CFR is a very popular. Very impactful program. It's format is pretty standard throughout their retreats and impactful for sll the reasons you gave. So happy you did it. To this day I still make gifts that can be given to participants!

[anonmbc in reply to troutgal]

I think that CFR has just opened its applications for this year's retreats. castingforrecovery.org

[PJBinMI]

I've been to one MBC retreat, a BC retreat, several BC and MBC Conferences, and joined a self led MBC group that met once a month. The best part, for me, has been meeting and getting to know others with MBC. Learning more about the science of BC, MBC and treatment has been hugely helpful, too. During the first couple of years after the denovo MBC diagnosis, meeting women who had been living with this lousy cancer for 5, 10, 20, even 30 years was so encouraging! A woman that was in an on-line group who had a vacation home in Las Vegas invited others to join her for a long weekend there. I signed up right away. I think there were six of us there and we had a great time! One of the woman lived less than a two hour drive from me and she and I saw each other several more times. We had alot in common and became good friends. Of course, I was deeply saddened when she died, but I'd gotten to visit her twice in the hospital shortly before her death, and attended her funeral. That was several years ago and from that perspective, meeting her and becoming friends was well worth the loss.................. I've become less mobile, from preexisting spinal stenosis and resulting neuropathy and really miss being active enough to do so many things, including doing all that. Haven't traveled in a few years and feel alot less like my "strong woman independent" self!

[troutgal in reply to PJBinMI]

PJBinMI - thanks for sharing your adventures. Sounds delightful. If your MI is michigan...I have been flyfishing at least once every summer to Grayling. The Au Sable River since 1990. Losing new friends is tough. I still remember "Suzy" from an Ohio CFR retreat at which I was a volunteer. She was awesome, energetic, a great story. The day of her funeral a friend and I went flyfishing in her memory . Thinking if Suzy always brings a smile to my face. I am sorry about your other health issues and hope you can find inspiration from these exchanges.

[PJBinMI in reply to troutgal]

Yes, Michigan, but not close to Grayling. My father was an avid fly fisherman and taught my brothers and me how to do it, too. I don't think I've ever fished any other way! I grew up in Northern California and Wyoming....loved eating trout and salmon. Fishing is so relaxing...the being out in nature, where it's so beautiful. I haveen't been fishing since I graduated from high school, a very long time ago, lol.

[kearnan]

If I had the money, I would go on one if it were not too far, but I would imagine it would be nice to know that everybody there was going through the same thing and it would be easier to discuss. My friends try being kind but unless you are going through it, they cannot really understand it.

[troutgal in reply to kearnan]

I don't know where you live, but many of the retreats pay for everything except your travel to get there. Casting for Recovery is the one I went on. 14 participants, this is CFR's research based "ideal " number. I encourage you to look for retreats near you that are not costly.

[PJBinMI in reply to kearnan]

I agree with troutgal that alot of retreats have funds available to cover costs. I'm trying to remember the name of the group in Wisconsin that has wonderful retreats...will let you know if I find it.

[PJBinMI in reply to PJBinMI]

Wisconsin retreats, at a wonderful spa resort. Financial assistance available. Here is link

bcrecovery.org/events/event... I went to the MBC retreat over 10 years ago. Well organized and we were all given "permission" to skip planned activities if we needed to nap or care for ourselves in some other way. We each received one free spa service--I had a hot stone massage. It was wonderful.

[13plus in reply to PJBinMI]

This looks wonderful but it's too far away for me. I have never been on any retreat. This convo has inspired me to search for something else near me though!

[troutgal]

PJBinMI - I hope you will check out Casting for Recovery.