breast cancer support groups- vent

[marni]

It has been an interesting process to try and find any around here. I have been informed that they are all full and not taking new people. Some have made a point of asking me my religious affiliation and deciding that perhaps I "would not feel comfortable with other members offering prayers or being in a prayer circle." Needless to say that this left me feeling pretty cursed, demeaned, and unworthy of concern.

Others are too far away and would require me to leave FIL alone at home for too long. I had about given up but contacted one last social worker at the Christus St. Catherine who connected me with the American Cancer Societys Can Care which makes a point of matching up individuals who are facing cancer with those who have survived a similar experience. Yesterday a woman called from Can Care. Although she was very nice, and very sympathetic, her experience was a lumpectomy followed by plastic surgery for breast reduction. She made a point of reassuring that I would soon be recovered and able to attend my bible study classes, care for my young children and commute them to their after school activities very soon etc.

Obviously no one had bothered to inform her that I am 62, my children are all grown, and that I am more concerned with being able to ride my bike again than attending bible study.

I finished the call once again feeling disregarded, belittled and not taken seriously.

I am glad to report today that I got another call from another volunteer who was an actual mastectomy survivor, an active athelete, my age and best of three, in the area and active in a support group that meets about 5 miles away at a schedule I can handle, plus she was extremely supportive, had some good suggestions for coping and was very insistent that I should feel free to call her anytime I needed to dither or vent.

It is a sign of my mental state that I can swing back and forth between the two states of being weepily furious and comfortably reassured and humorous within a 12 hour period.

I guess part of the problem is that although I still feel good about the decision to have the mastectomy I wish I had opted to have it sooner, but that would have meant missing the Little red riding hood ride with my sisters so..... I just want it all over with.

now back to your regular reading.

marni

[NbyNW]

So glad to hear that you finally connected with someone who you feel comfortable with.

Re the woman who was telling you about whether or not you'd be able to be there for your young children and go to your Bible study, sometimes I just want to tell those people that they would be more helpful if they did more listening and less talking. But of course they're too busy talking, which makes me wonder whether they're in any condition to be helping people.

I'm sorry you've had to go through so much frustration just to find a little support.

I don't envy you the hurry-up-and-wait time. But I hope all goes smoothly and please keep us posted on how things are going.

[indysteel]

how frustrating, Marni. I sure hope the first woman who called you was just misinformed. Otherwise, her presumptiveness is just inexcusable. I'm glad you finally found a supportive listener, but jeez, it shouldn't have to be so hard. I naively assumed that cancer support was a little more non-denominational/non-religious. I apparently assumed wrong, at least in your neck of the woods. Hang in there. We're here for you.

[Crankin]

Marni, I would be more than a little disturbed if I had received the talk you got from the first woman. So glad you found an athletic woman who has been through what you are going through. I also understand how the decision to wait may be frustrating you right now, but if you can focus on the ride and the wonderful time you will have with your sisters, maybe that will help? I assume your surgery is scheduled right after the ride. It will be soon enough and I am sure the doctors would not have let you wait if they thought it made a difference in your recovery.
It amazes me that religion is getting mixed up with cancer recovery.

[OakLeaf]

Marni, that's awful about the first person you talked to - I'm so glad you found someone you can connect with.

Are there resources you can draw on for caregivers for your FIL while you're going through this process? It seems to me (as I said before w/r/t your sisters) that so often people's reaction is "Oh, you're sick, poor me!" - so on top of that, having formal caregiving responsibility not only is a huge emotional drain that you don't need now, you physically won't be able to do it for a period of time after your surgery. I know home care services have been cut to the bone in most states and I doubt Texas is an exception, but maybe your support person can connect you with an agency.

[hebe]

I'm so sorry that you had such a bad experience finding support. I guess that cancer is indiscriminate in who fights it, and you do need to have more in common than cancer with people who are meant to offer support. The woman that you're talking to now sounds a much better match however. I hope your Little Red Rding Hood ride goes well, sending you many positive vibes from here.

[jobob]

That's really sad to hear, Marni, on top of everything else you're going through.

I'm curious, have Livestrong or Susan G. Komen or the Breast Cancer Fund provided you with any sort of help or referrals?

The reason why I'm asking is because so many of us here have done fundraising for these organizations or have donated to others' fundraising efforts, have taken part in rides and other events benefiting these organizations, and/or have donated large amounts of our time supporting such events.

It would be gratifying if our work and $$ actually helps out one of our own ...

[ny biker]

They're also both completely non-denominational. I've never seen any religious references in anything from them.

[KnottedYet]

How far away is Austin?
Contact information http://teamsurvivor.org/doc.aspx?34
Their direct website: http://www.teamsurvivoraustin.org/

Team Survivor was huge for me, surrounded by other athletic women who'd gone through the same cancer mind-f*ck. I'll always be deeply indebted to the wonderful women of Team Survivor.

[channlluv]

{{{Marni}}}

You can always vent and dither here, too. Some of us here have been through various cancers, if not exactly what you're going through. But regardless, you always have our love and support.

Roxy

[MomOnBike]

I want a go at this. I'm a very nice, sympathetic woman who has had a lumpectomy (x2). (How am I doing so far?)

I want to reassure you that you will soon be recovered and able to attend wrenching classes, care for any new bikes that somehow follow you home, and then take them to group and charity rides very soon (and ride the wheels off lots of women without your, ahem, experience).

More seriously, it is annoying that you were paired with someone who made all sorts of wrong assumptions about you. I'd have let my inner snotty teenager loose upon her, and maybe tried to feel bad about it the next day. Maybe.

It sounds like you finally did find a group that works for you. Here's hoping that it actually does work. Don't forget to come here when you need to vent, or any other time, for that matter.

[margo49]

Me too! Lumpectomy followed by mastectomy in 1996, followed by chemo and 5 years tamoxifen; recurrence (Grade III right smack bang in the middle of the Old Scar:eek:) in 2009 so more surgeries, more chemo and then radiation...now on aromasin and technically well and rebuilding myself up by watching the Giro Tour d'Italia
One thing I found was that the best "support group" turned out to be the women sitting on either side of me - waiting outside the doctor's, in the chemo "lounge", wherever. Seems random but like a lot of things in life it worked for me.
But every woman is different.
Thinking of ya...

[snapdragen]

OT for a minute -- Margo!!! How have you been!

[marni]

thank you everyone for the venting support and many helpful suggestions and stories.

Margo49 your story is inspiring and makes me feel petty for my complaints- thank you for adding your story so I have a scale of relativity. You go girl, continue to get healthy and ride strong.

Knotted yet- austin is 2 1/2 hours a way if the traffic goes right. Thank you for the links though, I will reach out and see if they have anyone or anything around here or somewhat closer.

Jobob- both Livestrong and Komen have been generous with their information, but also very generous with sharing my address with their various fund raising efforts- this is a particular affront, especially coming from Komen since I have in the past managed to raise a goodly chunk of change for them in memory of two friend who have died of breast cancer.

oakleaf- I have my son and my daughter both coming to stay for a week and my dh is going to be taking some time off. If worse comes to worse, dad can skip his gym sessions for a week or so if I can't drive after the kids leave and otherwise, if I can be available as eyes for him, he can pretty much cope for himself except for cooking dinner which dh can do.

Crankin and Indy steel- Unfortunately this is sanctimonious god found and blessed us Houston so religion enters into more stuff than it misses. I have given up fuming silently about being prayed over any time we go to dinner at another persons house. Just down the street from me is the Cinco Car Care Garage, Christian community center and 24 hour dogwash- I kid you not. Occasionally they have a humorous pithy saying on the car care sign. Recently it read "being in a garage doesn't make you a car nor does being in church ;make you a christian." Today's is just plain churchy- "for inner peace try looking up."

I had an excellent ride yesterday in spite of the usual 20 mph winds, and today in addition to five pounds more on all the resistance and weights, I did 40 leg presses at 230 pounds Whoo hoo!! Thats far beyond my expressed goal of 10 % a quarter which was one of my new years goals.

thanks for listening and for the support and advice. Team Estrogen members know everything and care, to boot.

marni

[jelee1311]

Marni I'm so glad you have connected with a group that is right for you. You have been in my thoughts and I'm glad you are keeping us all updated on your progress. I'm happy you have red riding hood to look forward to before your surgery. I hope that you are also doing some sort of complimentary care to help relieve your stress. Sending good vibes your way. Jenn

[ny biker]

I would call livestrong and komen and ask them to put you on their "do not solicit" list. And I would tell them you're offended by the fundraising efforts, since you're just trying to get help right now.

If it helps, my neighbor had a mastectomy 5 years ago. She was pretty sedentary at the time, but a couple of years later she joined a gym and has been actively working out since then -- frequent cardio and weight training sessions. I think she has some shoulder/arm weakness on the side where the mastectomy was, but otherwise she is doing well and in fact only needs a mammogram once per year.

[txred9876]

I just read through this thread and sometimes people on help lines are no help at all!!!!

I am a double mastectomy survivor without reconstruction....
I had inflammatory BC in 2005 and I am fast approaching my 6 year mark when they didn't expect me to make it a year....

I have lymphedema on the bc side but I deal with it with a lymphedema pump. I was very seditary before diagnosis and I also got back into working out with the help of the team survivor ladies in Austin, tx. I lost 55-60 lbs and now do triathlons!!

In time you can do many of the things you did before.....we are here to support.... Tina in Austin

[marni]

tina, you and your story are amazing. I wish I lived in Austin.... My daughter does and she loves it, but here is where the work is.

Keep up the good fight. I can't swim very well, but at least I am getting into running so maybe some day a triathalon is in my future, or a biathalon.

marni

[sundial]

Marni, you are smack dab in the Bible Belt so it's not surprising that faith and religion are being interjected into your encounters with support groups. I haven't experienced what you are going through but my mother is a bc survivor and had a lumpectomy followed by radiation therapy. I think what helped her most was talking with the oncology nurses and fellow patients who knew exactly what she was going through.

Having a forum of like minded people is a big boost for the challenging days. Cancer robs peace of mind and wrecks havoc on the psyche and having contact with fellow survivors is a real boost for when you are experiencing bad days.

Here is one such forum:

http://www.healthboards.com/boards/forumdisplay.php?f=23

Marni, I wish you a steady recovery and lots of support in the coming days.