Dis Breast Cancer Survivors Part III - GAGWTA!

[honugirl]

LMP, sorry about the pain. When will y ou receive the results of your blood test?

Honugirl, what kind of support group excludes interested people based on which doctor is following them?

That is just wrong.

I am sure there are not endless numbers of groups for your age group. Shame on the facillatator of that group. i wish I could straighten him/her out.

Is there someone you can email about being excluded. i would like that in writing, and them I would make that public knowledge.

No m'am that does not cut it in my book.

I totally agree. I guess the social worker I talked to was in young adult oncology, which is an obvious place for a tumor based support group to be based at. But she said, well, since it's not malignant, we can't help you. It's still a tumor. It's still destroying my body. I still have to have it removed. I still have to think about radiation and what few drugs are offered to me. I may not be losing my hair, but that doesn't mean I don't grieve for the life I've lost and have challenges other people my age have like finding a job, dealing with the mental challenges of this, etc.

They said they'd try to find me a group of people which chronic illness, then seemed shocked when I was resistant. I told them I didn't want to be in a group with people older than me, I already have that and I love those women dearly. I need people my own age to relate to that can relate to the fear I'm feeling. Someone with MS can relate to a point, but they can't relate to the worry of will the tumor come back? Did we get it all?

This is a major hospital. They have the only YA support group around. Unfortunately I inadvertently called her supervisor first who pawned me off on the lady I spoke to today. So I have a feeling an email to the supervisor will prove to be less than productive.

I understand there's limited resources out there, but honestly, I'm asking for a chair in a support group. They don't even need to provide me a cookie if they're that cash strapped.

She was going to find me an alternate support group and/or a cheap therapist. I haven't heard back.

It's just so sad to me that they would exclude someone who really needs help and support. Maybe I'm supposed to get through this and start my own support group where no one gets excluded on the basis of age or diagnosis.

 

[Candy30]

Honubaby- I agree with snappy. That doesn't seem right at all. Snappy if you are ready we can put on our all black outfit and take care of business!!! Seriously I don't like that they exclude you like that. It seems that a place that offers help would have more compassion than that.

About you starting your own group.....most successful ventures come from filling a need. You go and do your thang if you are serious about it. Although we may not know exactly how you are feeling.....we know that you are hurt. We care about you here and if anything....we try to be the listening ear.

GAGWTA!!

 

[honugirl]

Honubaby- I agree with snappy. That doesn't seem right at all. Snappy if you are ready we can put on our all black outfit and take care of business!!! Seriously I don't like that they exclude you like that. It seems that a place that offers help would have more compassion than that.

About you starting your own group.....most successful ventures come from filling a need. You go and do your thang if you are serious about it. Although we may not know exactly how you are feeling.....we know that you are hurt. We care about you here and if anything....we try to be the listening ear.

GAGWTA!!

Thanks Candy! I think you and Snappy should go in under the cover of darkness and shake that place up! I have a call into the neuroendocrine psychology center, but I haven't heard back from them either. I think all of their stuff is covered as office visits so more co-pays which really won't work for me.

I"m seriously thinking of starting a group for young adults with any type of tumor. Basal cell carcinoma, breast cancer, lymphoma, pituitary tumor, you name it, we include it.

Not that I don't love the friend's I already have, I love you guys, don't know what I'd do without y'all. Not that I don't love my support group back in Bellingham who are all older than me. It's all valuable, I just wish I had someone my own age to commiserate over losing those college experiences or trying to fill those resume gaps or even dating.

On a good note, I had a correspondence course that I started at the university back home. The completion date was coming up and I just don't have the energy to work on it, so I explained my situation and they gave me an extension to January to start the first assignment. So that helps a lot. It'll make it easier to make the transition back to school later.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

My apologies for not keeping up over here. I think of you ladies often!! Sending many hugs and healing thoughts!!

Laura, I caught the bit about your UC. I am so sorry. You will be in my thoughts. I hope you are able to schedule your surgery soon. I am glad you enjoyed your vacation! Siesta Key sounds lovely.

Alice, I wonder how I will recognize you around WDW now that both of your bosoms are matching?

We leave for WDW Saturday AM. I'll be doing a live report like I did last year if anyone would like to follow along. The link is in my signature.

Linda, much to DH's disappointment he did NOT manage to talk me into the Sigma 30mm. Hopefully he will manage to eek out some decent shots with the 4 cameras and vast assortment of lenses he already has.

Sha, I am sending you a PM with my cell # in case you are able to pop over to the parks.

 

[snappy]

Honubaby- I agree with snappy. That doesn't seem right at all. Snappy if you are ready we can put on our all black outfit and take care of business!!! Seriously I don't like that they exclude you like that. It seems that a place that offers help would have more compassion than that.

About you starting your own group.....most successful ventures come from filling a need. You go and do your thang if you are serious about it. Although we may not know exactly how you are feeling.....we know that you are hurt. We care about you here and if anything....we try to be the listening ear.

GAGWTA!!

I am ready if you are.

Now where in the world did I leave my leather whip??!!??

LOL

I also can't locate quite the right smilie to accompany these words.

Not sure if the worship one is right.

Seriously though, unfortunately I am a bit too direct and
too um sharp. It is not really intentional I think I just lauunch right into it so it must be instinct.

Sometimes it works sometimes not but I feel better afterwards.

Forget the steel magnolia I think I resemble the wicked witch of the west more.

Honugirl, a support group as you describe would be gold. Are you envisioning a live group or an internet one?

I think Laura started one for young cancer survivors years ago but it was internet I believe and I think she may have passed the baton to someone else to facilitate.

She might have some insight on where to begin.

Laura and Linda were the GAGWTA instigators too although we owe our esteemed name to Ann's excellent DH.

I think I finished the budget for next fiscal year today. . .until it changes. Those idiots were giving me changes right up to the eleventh hour. Geesshh, do they think I just push a button and presto out comes the budget???

Maybe It is just smoke and mirrors or even better, yea that's the ticket, PIXIE DUSTTTTTTTTT

Oh yes ladies, it is time for a glass of wine for me, I was actually bouncing off the walls of my boss's office when I was ready to put the budget out of its misery.

GAGWTA!!

Hey, Elizabeth, I sure hope you enjoy your trip. I wish I had time to read the pre trip thread I bet you have going!!

 

[luvmarypoppins]

Good evening ladies

Shorter post than usual. Late dinner tonight after ds gets home. The surgery is 10:30 tomm., so we need to have ds there at 8:00 I think. He is so not a morning person.

Lisa - I am sorry you are having all these problems. I feel a group with people your age would be great for you, lots in common etc. I like the idea, instead of joining them, beat them and start your own group. At the hosp. large where I go, there is nothing for my cancer, just breast, leukemia, maybe lung, hmm, guess I dont fit in either. Maybe I should write a letter to the university president, a Dr. S.

Alice,Elizabeth and Sha, hope you all can meet sometimes during your trips etc. That woulld be awesome.

Laura - Hope things are progressing in a positive surgery direction. My heart goes out to you sista.

GTAGWTA. Thinking of you all.

 

[honugirl]

I am ready if you are.

Now where in the world did I leave my leather whip??!!??

Go snappy go!!!!!!!!!!!

LOL

I also can't locate quite the right smilie to accompany these words.

Not sure if the worship one is right.

Seriously though, unfortunately I am a bit too direct and
too um sharp. It is not really intentional I think I just lauunch right into it so it must be instinct.

Sometimes it works sometimes not but I feel better afterwards.

Forget the steel magnolia I think I resemble the wicked witch of the west more.

Honugirl, a support group as you describe would be gold. Are you envisioning a live group or an internet one?

I'm envisioning a live group. Read down further for my idea.

I think Laura started one for young cancer survivors years ago but it was internet I believe and I think she may have passed the baton to someone else to facilitate.

She might have some insight on where to begin.

Laura and Linda were the GAGWTA instigators too although we owe our esteemed name to Ann's excellent DH.

I think I finished the budget for next fiscal year today. . .until it changes. Those idiots were giving me changes right up to the eleventh hour. Geesshh, do they think I just push a button and presto out comes the budget???

Maybe It is just smoke and mirrors or even better, yea that's the ticket, PIXIE DUSTTTTTTTTT

Oh yes ladies, it is time for a glass of wine for me, I was actually bouncing off the walls of my boss's office when I was ready to put the budget out of its misery.

GAGWTA!!

Hey, Elizabeth, I sure hope you enjoy your trip. I wish I had time to read the pre trip thread I bet you have going!!

Enjoy that wine for me! I've got a bottle of ice wine here just waiting to be opened, but my mom won't let me. She says it'll interfere with my meds.... Moms!!!!!!!!!

Good evening ladies

Shorter post than usual. Late dinner tonight after ds gets home. The surgery is 10:30 tomm., so we need to have ds there at 8:00 I think. He is so not a morning person.

Good luck! Good luck! Good Luck!

Lisa - I am sorry you are having all these problems. I feel a group with people your age would be great for you, lots in common etc. I like the idea, instead of joining them, beat them and start your own group. At the hosp. large where I go, there is nothing for my cancer, just breast, leukemia, maybe lung, hmm, guess I dont fit in either. Maybe I should write a letter to the university president, a Dr. S.


GTAGWTA. Thinking of you all.

Hey that's not fair. Lets get a group going for you too.

So here's my current idea. I want to reach lots of Young Adults, right? What better than the local college? I'm thinking of forming it kind of like a club. They have tons of meeting space. They have a psychology department who might provide a facilitator since they have a program for group counseling... I would open it up to anyone who's been touched by any type of tumor. I'll include friends of people going through it. We won't exclude anyone. That's what I'm thinking, what do y'all think?

 

[laurabelle]

~~~***GAGWTA sistas***~~~

honugirl- I'm speechless...I originally wanted to start an IRL support group, but instead started an online group for young bc survivors that really took off. Laurie is correct, I handed the reigns over last year. I would also suggest you look into http://www.ulmanfund.org/ which is for young people with all types of ca. I don't know if any of these are close to you, but here is a direct link to their support groups in OR http://www.ulmanfund.org/UCF/tabid/173/Default.aspx?State=OR

Maryann- Yes, we are "anomalies"!!! You show so much strength and courage...my continuing prayers for your healing. Please let us know how your son does. I missed what is going on with Allyssa...praying for her too.

Elizabeth- I hope you have another magical birthday trip! I will be living vicariously through your TR!

Ann- I hope you are having a great summer! A break from the computer is a good thing...

Sha- I'm sorry for your recent loss, missing loved ones.

Candy- Flying colors...I like it! Thanks sista!

Alice- You sound great! Have a magical trip sista!

Laurie- Whew, sounds like they're keeping you busy at work! Good. They need to know how invaluable you are! Are you still planning a fall trip?

Thanks for all the love sistas! I hope I didn't miss anyone. I spoke with my GI nurse yesterday. The biopsy showed active disease (duh) but no infection or ca. They are faxing orders for blood work to my local lab to see how wonky my blood is. I have until the 6th, then I guess I turn into a pumpkin. The frequency is down a teeny bit, but there is a lot of blood, yuck. I could be admitted for IV steroids right now... which may or may not move things along... but I would be in for a few days minimum and my youngest dd's birthday is tomorrow, so I'm trying to stay home through the weekend at least. My sister is coming to visit today. We'll lay around the pool...sounds way better than the 13th floor room with a view at UMMC...

 

[Aliceacc]

Honogirl, contact the American Cancer society. They may be able to give you info on an existing group or on starting your own.

Have flyers/ cards made up. Give them to your doctor, then to all the local doctors you didn't choose. I bet you have this up and running in no time at all!

 

[Sha]

Thanks for the thoughts and all... am doing much better

am hoping to meet up with JSG at least once. Am on call part of her trip and the only nurse working. If I dont get any admissions I may go down and spend some time.

 

[snappy]

Honogirl, contact the American Cancer society. They may be able to give you info on an existing group or on starting your own.

Have flyers/ cards made up. Give them to your doctor, then to all the local doctors you didn't choose. I bet you have this up and running in no time at all!

This and Laura's ideas are great!!!.

I just knew the girls here would chime in with some tips.

Y'all rock!!

Laura, I was acting like I was on steriods my self yesterday. I had pretty much given up any hope of a trip, then last night found a deal at the Dolphin for $109.

We are watching our pennies, but if DH can tear himself a way, we are going the last week of September, for an adult only trip.

Although my globe trotting DD19 daughter wants to go for a "girls only" trip. She really surprised me as I can't see the attraction after being in Paris and Spain not to mention London for a month long trip.

I think she must be intrigued by the food and wine thing.

Also, we really did have a memorable and fun trip with all of us together this past Memorial day.

If DH bails, I might fly her up just for the weekend between classes.

Anyone else going? I hate to spend the money but I am feeling I am entitled or something. DH is literally working around the clock and the situation is not improving. So much is falling on my stooped shoulders.

Bright spot=my bestest friend in the world from New Orleans is coming up and staying with us today for a few and also for the hot air balloon championship next week.

We have a good time and figure out all the problems of the world over Heinekin (her drink of choice) and red wine (mine).

LMP, good wishes for your son today.

Laura, I hope you make it through the weekend. Enjoy the visit with your sister.

 

[Aliceacc]

Snappy, $109 is a great deal!!!

Enjoy your visit today. I saw a good friend yesterday; she and her son are in town to visit her parents-- she moved to Illinois 6 years ago, then her marriage fell apart. We had a wonderful afternoon.

I, of course, have her planning a trip to WDW next summer!! I just sent her an email (and, no, she won't receive it until she gets home Saturday) with info about the AAA discount and the resort types.

 

[snappy]

Snappy, $109 is a great deal!!!

Enjoy your visit today. I saw a good friend yesterday; she and her son are in town to visit her parents-- she moved to Illinois 6 years ago, then her marriage fell apart. We had a wonderful afternoon.

I, of course, have her planning a trip to WDW next summer!! I just sent her an email (and, no, she won't receive it until she gets home Saturday) with info about the AAA discount and the resort types.

Yep, saw that rate on Travelocity when checking another hotel mentioned on the Hotels and other Orlando attractions board.

I prefer not to book through Expedia or Travelocity so I checked Dreams Unlimited on the main board, and they had the same price listed, It was $149 forever for those days so I feel like I got a deal.

September can be tricky hurricane wise.

Gotta squeeze a few more days out of the AP's we have. They expire Sept 30 and I probably won't renew for awhile.

If the trip happens, this will be my 4th trip on them, 3rd for DH.

The only year we did better was 2002 but I don't count that because I rented a house for 3 weeks straight in the area, and then proceeded to take 3 other trips.

I think I burned the family out that year, but they did enjoy the pool in the backyard.

 

[Candy30]

Hi All,

I wish I was going with the 3 of you to Disney so I can meet you all. Have a great trip and Jacks...I will be following your trip report. I love reading those and not that it's someone I know...its even better. Alice have a good trip too.

Honu- I think you are moving your support group right along. Everyone has offered some great suggestions!! I know that it will be successful because you are ON IT already. You go girl!

Sha- I hope you make it to Disney

Snappy what a great deal. I am going the middle of Sept. 16-22nd. I keep missing everyone.

LMP- I am praying for your son. Keep your chin up.
GAGWTA

 

[jackskellingtonsgirl]

GAGWTA, Ladies!!

Maryann- Many good thoughts for your DS today!!

Honugirl - Sounds like you are off and running! I am sure your group will come together quickly!

Laurie - YAY for a good deal! We are going Dec. 3-7. Booked with free dining at AKL right now, but we may modify back to room only. "Free" dining never seems to save us any money.

Candy - Your trip will be here before you know it! Hopefully you will have great weather and low crowds!

Alice - Are you guys ready to go? Those last few days seem to drag.

Laura - Thinking of you!

 

[Pea-n-Me]

Just a quick hello!

Laura, welcome back!!

Honugirl, that type of group would be great for you, I think.

Glad to hear of some upcoming trips and meets.

jsg, say it ain't so! He would have SO MUCH FUN with it!! He promises he'll be extra

much to DH's disappointment he did NOT manage to talk me into the Sigma 30mm.

(Got your back, obm. )

Hugs to all! GAGWTA

 

[Sha]

When you go to WDW in December JSG I will be at DL... well... sort of! I got a wild hair to add to this trip! On the 3rd, I am going to go into MK at WDW and then fly out to DL and be there! Both parks in one day. Just have to get a friend to corresponde her flight into Orlando the day before so she can too. Hoping to share it with someone else too. There is a small group of us going to DL (thread is in my siggy). My first trip there! And be there on Walt's birthday too.

 

[jackskellingtonsgirl]

Sha, that is so neat! What a fun trip that will be!

 

[honugirl]

GAGWTA everyone!

I'm going to work on my group when I get back up to Bellingham at the end of the month.

I was denied my tubal ligation because insurance doesn't cover it, but I did end up with an IUD that they claim is just as good, if not better. We'll see. Apparently you can have anything to do with a baby paid for, but you can't pay to not have a baby. Confusing, I know. I thought about writing them a letter stating the genetic component and asking for an override, but after much talk with the Dr. this might have some unintended good effects on my situation for now, so we'll hold tight.

I could kill the surgeons office. I called them today to see if my chart notes and referral paperwork had gotten there. They told me no. I was crying on the phone, I needed it to be there so badly. MY endo had promised that it got sent last night. So I get a call back a few minutes later, 'Oops, I made a mistake, it is here." Thanks for the heart attack. Now the waiting game for a consult comes into play. We have to see if he'll accept or reject my case. It could be interesting.

Can ya tell I'm wound up tighter than a tick? At least I got a new book at the library that might calm me down.

Oooh, just heard back from the fabulous social worker. I have the name of 2 therapists in Portland that might take my insurance. Which is nice I guess, but not really what I was looking for. I was told that I could find a group through them. Punks.

I'm just exhausted dealing with everything. I just want to go to a support group and have a consultation with a surgeon. Really is this too much to ask?

I guess though if I have to call 3 different places to get a handle for a brand new fridge, the struggles with the hospital isn't anything new...

 

[Candy30]

GAGWTA
I'm going to work on my group when I get back up to Bellingham at the end of the month.

Get it going shawty! I know you can make it work!

Oooh, just heard back from the fabulous social worker. I have the name of 2 therapists in Portland that might take my insurance. Which is nice I guess, but not really what I was looking for. I was told that I could find a group through them. Punks.

That they are! Don't worry...when your group is up and poppin', you won't have to deal with that.

I'm just exhausted dealing with everything. I just want to go to a support group and have a consultation with a surgeon. Really is this too much to ask?

I guess though if I have to call 3 different places to get a handle for a brand new fridge, the struggles with the hospital isn't anything new...

You would think it should be easy. But that's life with insurances. I know it is frustrating dealing with it all.

So in about 2 weeks we will be going to a religous convention in Wheeling, WV. We are staying at a hotel just outside of WV in OH. So I prepaid it all because I knew I would have to have my final payment for Disney in. I called just to check and they say they have not received all of my paments. I go online to my bank and forward all the checks to them. They finally called back and said that my payments were made to another reservation.
WHAT?!?!? Talk about having a coronary. I finally got it straightened out this morning. Whew!!!