Dis Breast Cancer Survivors - GAGWTA!

[MerryPoppins]

I'm enjoying meeting all of you. As you can see I figured out how to put the ribbon in my signature. Thanks so much.

 

[laurabelle]

You're all totally welcome!

 

[Pea-n-Me]

Hi Merry Poppins and snappy. Glad to hear everyone's doing well. I like seeing all the ribbons in everyone's signatures!!

What I've been thinking about as far as putting a "Dis Breast Cancer Support" group together was to have a network of people here that could be accessed either by one of us who might need support, or for any other Dis-ers who may be looking for information or support. I know lots of times when going through "scares" or having other issues, it's nice to talk to others who can not only understand but maybe have ideas or solutions for things that have worked for them, etc... When you think there are over 60K members here, there are bound to be lots of others who are dealing with the same issues we are.

I don't know exactly how to go about it, though. Possibly make a Buddy List of all of us? (though other Dis-ers could not access us that way). What about having our own forum? Is that feasible or even necessary? Does anyone have any ideas?

Dan - any ideas here?

 

[Pea-n-Me]

Whoa, I just noticed on this whole page it's all pink ribbons!!

 

[PigletsPal]

I'm also another survivor. Finished Chemo April 2004, Rad. June 2004 and past 2 Mamo's have been a clean bill. I was very lucky because I didn't need a mast. and I THANK GOD every day.

 

[snappy]

I'm also another survivor. Finished Chemo April 2004, Rad. June 2004 and past 2 Mamo's have been a clean bill. I was very lucky because I didn't need a mast. and I THANK GOD every day.

Congrats Pigletspal on the clean mammograms!!!

A question about the post mammos. . . I'm due for my first post surgery one on my remaining breast next month, the "diagnostic" type, which I think just means magnified.

Anyway, my question is, does the radiologist read the films while you wait or do you have to sweat it out for a few days?

Pea-n-mea, I like the idea of a support group of some type. A separate forum might be helpful but I am not sure if there will be enough posts to warrant it. I wonder if we could have a "sticky" at the top of the CB where anyone either needing help, support, or wanting to share info could post.

On separate issue, I found a wonderful leaded crystal Lenox vase at Foley's Saturday that was in a special box with a pink ribbon on it. The dish was made with a pink edge on the rim. It made a wonderful gift for my Mom for Mother's day, along with some other goodies, and a steak dinner. On the box was info about a cancer info website.

Now I always look for products that display the pink ribbon. I have even found food items. A donation is made to the Susan B. Komin Foundation when you purchase certain of these products. Last week Lowe's had pink geraniums.

 

[Pea-n-Me]

Congratulations, Piglet'sPal. We were undergoing the same thing at the same time last year! Too bad we didn't know eachother then, I'm sure we would have had lots to talk about! I am also noticing more and more things with pink ribbons on them.

Is anyone doing any cancer fund raisers this year? I am doing the Relay for Life in June and am really looking forward to it.

 

[laurabelle]

I love at least having a way of identifiying ourselves on the Dis, there sadly seems to be enough of us around and there are always women going through the scare of a bad mammogram or needing a biopsy...Like I said, I founded an online group for women dxed under age 40. It keeps me hopping, unfortunately there are plenty of us out there, and not enough support specifc to our age group. If anyone needs a terrific support group you can PM me for details, we're exclusively for young bc survivors only.

snappy- I had bilateral masts, so no more mamms for me. But any testing I have done, I ask nicely if they can tell me something that day. Waiting is the worst...I know we've all done too much of that!

 

[laurabelle]

Linda,
My online group gets together annually to do a Race for the Cure in a different city. This year it's June in St. Louis...I can't wait! I do the national race in D.C. every year and my local race here in MD. A dear friend of mine formed a team for me while I was doing chemo, day 16 of Taxol to be exact, I managed to walk the whole thing, purely on love, support and adrenaline!

 

[Dan Murphy]

.....What I've been thinking about as far as putting a "Dis Breast Cancer Support" group together was to have a network of people here that could be accessed either by one of us who might need support, or for any other Dis-ers who may be looking for information or support. I know lots of times when going through "scares" or having other issues, it's nice to talk to others who can not only understand but maybe have ideas or solutions for things that have worked for them, etc... When you think there are over 60K members here, there are bound to be lots of others who are dealing with the same issues we are.

I don't know exactly how to go about it, though. Possibly make a Buddy List of all of us? (though other Dis-ers could not access us that way). What about having our own forum? Is that feasible or even necessary? Does anyone have any ideas?

Dan - any ideas here?

That would be super, Linda. I know in the past when I have seen a DIS'er posting about a breast cancer diagnosis, I have tried to get her in touch with a few others I know who have gone through similar. A seperate forum would not work, IMO, thankfully too limited. And a sticky would not either, again, IMO. The stickies that are there are not read, and again, it does pertain to a small group.

I would think a buddy list of those who would like to be in the support chain would be great, just like the schools have for school closings. And have a point person, one go-to to get the ball rolling. Maybe??

Becky, go to the quote button in the right corner of my post to see how you should make it look for your signature, you are only showing the link, with an extra g.............

 

[Pea-n-Me]

while I was doing chemo, day 16 of Taxol to be exact, I managed to walk the whole thing, purely on love, support and adrenaline!

You are my hero, woman!!

Thank you, Dan. I guess I'll think about it some more. Would people here so far like to be part of a Dis Breast Cancer Survivor's Buddy Group? None of us know when we may need to support (hopefully never ). I think there'll be others to join us along the way, maybe if they see this thread. We could even add something to the ribbon in our siggies to let others know we are part of that group or just the ribbon alone would signify we're open to talking to others??

BTW Dan, I like your ribbon!! I'd agree the spouse of a BC survivor qualifies!! Have a wonderful time at WDW - looking forward to your trip reports!

 

[MerryPoppins]

Snappy, for three years after my mastectomy I had to have a mammogram every 6 months. Once a year it was both sides and twice a year it was just the side where I'd had cancer. (I still can't believe they can clamp that little bit of tissue into that machine. LOL!) I'm now returning to my yearly mammogram instead of the 6 month ones. Yay! I've never had to wait for a reading since my surgery. They've always either read them while I wait or read them before my appointment with my surgeon (if I was seeing her the same day). It sure cuts down on the anxiety to know that day.

I'd love to be a part of a DIS breast cancer group. Dan has pointed out a number of posts to me in the last few years, of women who were going through everything from a scare to mastectomies. I've offered support to all that I've seen. The DIS was so supportive of me in 2001. I can't begin to tell you how much the posts on my thread meant to me. I was able to say things here that I wasn't ready to say to my own family. And knowing that everyone was pulling for me gave me strength. I know how much cyber friends can help. Besides, we have a lot in common.

DH got me to sweetest stained glass, pink ribbon angel the other day. I just love her. I also have a pink survivor ribbon on my car. I tend to gravitate to the pink ribbon items, too.

 

[Tiger Fan]

Hello all - just checking in after being away for a fun Mother's Day with my DD at my parents lake house!! My story is pretty open here on the DIS, but if anyone wants more info on all my treatments feel free to email or PM me. Dan is wonderful about connecting others and was the catalyst in helping another DISer and I become the very best of friends!! Thanks to him wanting to offer support my entire family has become very close to someone that we'd otherwise have never met. The bond and friendship that we've formed is unbelievable! We meet in Disney regularly and they are coming for their second visit to our home the end of this month. Laurabelle also got me involved in her wonderful group (I just can't stay caught up, they're such a talkative group ) that has many very supportive women. I love the idea of being available here to others on the DIS. I know when Dan got Kathi and I talking she was at a point that she needed some very practical advice that really only someone who had lived through it could offer. Our DD's are only months apart and she wanted as much info as possible about what to expect and it was even therapeutic for me to talk about how we'd handled things so everyone benefited in the end. I'm still in the midst of treatments as my cancer spread pretty soon after my first diagnosis (5 years ago) so I've got lots of info and experiences to share if anyone needs specifics I too am an open book as another said and don't mind at all talking about things are being asked questions. I like to be a reminder to everyone about those monthly self exams and yearly mammos as well! Great thread, thanks so much for keeping this important issue fresh in everyone's mind!! Now, lets see if I got that link to work !
Lisa
Tiger Fan

 

[laurabelle]

Lisa,
I was going to email you about this thread...yeah SIS is kinda like the CB, it goes fast! I love that there's always someone around, that's not the case with all online support groups. Don't worry about keeping up, come on in anytime! I can't wait to hear about your trip with Kathi!

Linda,
lol! Believe me, I slept like a baby in the car after the race! I could have never done it on A/C, that kicked my butt!

 

[snappy]

It does seem to be therapeutic to share info with newly diagnosed women.
I have started meeting with a new once a month breast cancer support group (actually only been to 2 meetings so far). During the April meeting, the facilitator (who works as a social worker in an oncology clinic and is a survivor herself) had a scheduling conflict. There were only 4 women including myself there, one who had just had her surgery and had been for one chemo treatment. For a solid hour we answered her questions. When we were done, she seemed to feel so much better, was so grateful. What she did not realize was that we benefitted even more from the experience.

The doctors, nurses, etc. are great but they are very busy. It is wonderful to have someone to talk to where you do not feel like you are taking up another cancer patient's time.

You find support in unexpected places. My youngest DD is in third grade. Her teacher is a five year survivor and just went off tamoxiffen. We have share alot of laughs about hot flashes and doctor office apprehension. We have also have shared a few tears. Having her as a teacher really helped my daughter.

I participated in a relay for life celebration in my sister's parish Saturday before last. It ended up being a rainy Louisisana weekend so much of the festivities had to be held indoors in a high school gym. They raised $130,000 despite the weather. The team my sister participates in raised more than any of the other 50 teams, over $11,000 and her cousin-in-law raised more than any other individual at over $8,000. She works at this all year long.

I would certainly be willing to be available to talk to any newly diagnosed patient. It would also be great to have a get together. I don't qualify for the 40 and under support group but if anyone knows of an age unrestricted online support group, please advise.

Thanks for this thread.

 

[Amy]

Thanks, Laurabelle! I'm a 3-year survivor, had a lumpectomy, chemo and radiation in 2002. Right now I'm dealing with the side effects of Arimidex, but I'm still alive and kickin', my 2 teenage DS's are driving me absolutely insane, and I'm thankful for every minute of it. to all of us survivors and spouses/friends of survivors. And a special to Dan Murphy - somehow he manages to reach out to each and every one of us here on the DIS to offer words of comfort and support. You're the best, Dan!

 

[laurabelle]

Wow, I know what you mean about finding support all around you...That's great about your inperson group! Stick with it, we have an inperson group here in MD that another young survivor friend started and some months there were just a couple of us. Last month there was a dozen. It's amazing how much you can have in common with other survivors.

I started my online group because there is such a lack of support for younger women with bc. I was dxed at age 36. I chose 40 for the age limit simply because that is the age most women are recommended to go for their first mammogram...I wouldn't have made it to see 40 if I relied on mamm. alone to find my cancer. My gyn found my tumor on a yearly exam.

A couple of onlie support groups for mixed ages are on Komen and WEBMD.

 

[laurabelle]

Congrats Amy! Isn't it great how life goes on after cancer!!! Kids sure do have a way of making you fight and keeping you going!

 

[Mom2Ashli]

I think all of you Ladies are wonderful and special. I have been lucky so far in my life that Breast Cancer has not affected my family. But I feel for each and everyone of you. What an amazing group of Women.

 

[Pea-n-Me]

HI Lisa and Amy!

I agree with having to find emotional support outside of your medical team. My doctors and nurses were good for my medical issues, but it was through my support center that I could really get the emotional care I needed. I joined a Meditation and Journaling group which was the most cathartic thing for me because I like to write and it was amazing how I could sort through my feelings that way. I also just finished an After Treatment - What's Next group there, too. Through an aquaintance I met another woman from my town who'd been through the process before me and we've become good friends. She and I meet for lunches and dinners with more survivors from this area, and some of us will be doing the relay together. It's amazing the people you meet when you go through something like this, isn't it?

Believe me, I slept like a baby in the car after the race! I could have never done it on A/C, that kicked my butt!

On our trip in January I saw two different women walking around WDW with their families with that familiar "bald head under baseball cap" look that only most women who've had the same thing actually notice (though I wore a bright red sporty wig, LOL). I gave them so much credit. When I was in the midst of chemo I remember having the sudden urge one day after treatment for a steak dinner, don't ask me why. The steakhouse was right next door but it was a huge chore just to walk there, I was completely winded. I remember saying to my DH that even if someone were to give me a free trip to WDW I would never be able to do it. I was thinking about that a lot as I was running around WDW this trip and thanking God I was able to survive and heal. I usually get up early when we're on vacation and walk a mile while watching the sun rise. Sometimes people think that's crazy, but it's funny how knowing how it feels to not be able to walk a few feet make you appreciate what a gift it is when you actually can.