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.