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Veronica219 View Drop Down
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    Posted: Aug 09 2009 at 6:25pm

Hi All,

My sister has been dx with tnbc, she is 37 and a single mom. I have been doing a bunch of reading in the forums, in the books I downloaded from ACS, and other sources. What strikes me weird is that there is no support groups for family members. I am going through a whole slew of emotions that change constantly. My emotions are different from those of someone dx with this hideous disease. I find when I talk about what I am feeling or listen to someone else share their feelings I feel better. So does anyone know of something for family members?
Veronica


Edited by Veronica219 - Aug 09 2009 at 6:48pm
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cg--- View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2009 at 6:40pm
Dear Veronica,
 
I applaud you for caring for your sister..I believe Cancer Clinic your sister goes to will have information regarding support groups and the American Cancer Society should be able to direct you to all the support available in your community.  There are all sorts of services that may be available to your sister as a single parent. You do not know - until you ask and you may be pleasantly surprised how much help may be available for your sister and her children- which will ultimately help you.
 
I do not know specifically of any support group for caregivers or family members - but I do know we have been the sounding board and shoulder for many a caregiver who have come to ask questions and share their feelings. 
 
You can say anything here because many who write on behalf of the woman with TNBC are caregivers and they feel supported when they receive answer to their questions or different strategies to help their love one.
 
We understand how you may get angry, overwhelmed, sad, reduced to tears....
 
You can vent here whenever you have the need.
 
Love,
Connie
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Veronica219 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Veronica219 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2009 at 6:45pm
Thanks Connie!
Sometimes I feel angry but don't really know what I'm angry about. Sometimes I feel guilty when thinking of doing something with a friend. I worry a lot! It just never ends. It is extremely tiring at times. I guess the stress of everything sometimes makes me feel more tired. Then I pray for the day all the chemo and radiation will be done. I think I tire myself out with all the constant worries.
Veronica
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2009 at 7:17pm
Dear Veronica,
 
I just lost my long post but I will give you the Reader's Digest version.
 
You have a right to feel angry at the injustice of your sister having breast cancer, cancer not only is an invasion of our bodies but of the lives of those who love us. Cancer impacts everything....physical, mental, financial.
 
You may feel guilty about feeling guilty and that is a natural thing that a loving caring person would feel.
 
You cannot deplete your stores of patience, good humor, stamina without refilling....take an unstructured day without appointments or picking up the children, get something done for yourself, a day at the spa, unplug the phone, sleep in late, read a good book, watch a marathon of movies you wanted to see...and I suspect if you could arrange for a special treat for your sister (a gentle massage), and a special outing for her children - you would not feel like you were abandoning them while you regrouped. 
 
When my children were small and I had a particularly overwhelming day of life with being a working mother and other things, the next thing brought to my attention by whomever got the "I am sorry I am off duty" - sometimes a couple of hours to rejuvenate or pull ourself together is enough to get you through the next long haul of responsibilities. 
 
Give yourself permission to replenish yourself....do something nice for Veronica - because you cannot give your best if you are not at your best because you have not laughed or had a break from CancerLand.  Cancer and the physically tiring treatments, exhausting appointments and the rest of regular life demand the stamina of an Olympian athlete...not many of us are...so please do not beat yourself up for being human.
 
Trust me, your sister feels guilty about you having to go through it too!
 
If you look at the top of the page there is an oncology social worker that is available for you to talk to....if you would like a more 'professional sounding board'.
 
But should you want to just share what you are feeling and anything on your mind - you will find a wealth of understanding and caring from the men and women who come to this forum.
 
Love,
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2009 at 7:50pm
Dear Veronica,

Trying to find a balance while you are a caregiver is extremely difficult...

I agree with Connie...TNBCF is a safe, wonderful, supportive resource...

Another website to check out is Susan G. Komen's co-survivor section

http://ww5.komen.org/BreastCancer/FriendsampFamily.html?terms=co-survivor

I am aware of this section because I have a story posted there..Perhaps you would like to write a story and have it posted so you can help others? There is a link on the Komen website. if you need help finding it please send me a PM.

http://ww5.komen.org/breastcancer/SteveK.html

The Komen organization is wonderful in my opinion. I would contact a local chapter and see if they have a support group they could recommend.

I am a person who gets totally immersed when I am caring for someone I love. I find it difficult to focus on other things. I believe you are wise to seek some help and if things are overwhelming you may need some professional help as I did. There are counselors around who "get" what all of this means...

I think the most important thing to remember is that you need to try your best to take care of yourself while taking care of your sister and also to recognize that some things are just out of your hands...She may have a very good result (I pray for both of you that she does) or a difficult one. It is very hard when you love someone to realize that so many things are simply out of your control. I found it to be an overwhelming sad feeling of powerlessness that shook me to my core.

What is for sure, in all of this, is that there is no "fairness" to any of this.
So, yes, as Connie said anger is an understandable emotion. What is also clear is that the person who you are caring for can also feel devastated, sad and guilty that s/he needs your support.

In my view, there is nothing better that you can do for your sister than love her and give her as much time as you can...and I also believe that you will be proud of who you are. The greatest gift any of us can give to a loved one is our time. How you balance the time you give your sister with the time you need for yourself is an ongoing struggle...

I think all you can do is be kind and gentle to yourself and know in your heart that you are doing the right thing.

Recently on this site we have had many instances of loved ones "hanging a left" instead of showing compassion and stepping up to the plate. It is very special to me to read your story and know that you are trying your best to be there for your sister. Although you may need help along the way to get through this...your mission is pure and May G-d bless you for helping her..

please lean on us...we shall be here...and, again, if things become overwhelming (and maybe they are starting to be?) some professional help could be a good resource for you...Most major cancer centers will have someone on staff who "gets" it or will be able to refer you to a professional. That is a different resource than a regular support group and you many not find the need for a professional but please keep it in mind.

The other thing you may find helpful to do is writing...keeping a journal may be a good way to get your thoughts out..I found poetry helped me during the six months after my daughter's first surgery and chemo. I wrote her perhaps a hundred poems. She pinned and scotch-taped them
all over her home...she literally could not walk without seeing one and it helped me a lot to get my feelings out and it helped her a lot to read them. Dark, dark days....seems like a thousand years ago and at times, it feels like yesterday...It was actually five years ago..

Veronica, you are not alone...

all the best,

Steve

Edited by steve - Aug 09 2009 at 7:55pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2009 at 8:01pm
Steve, you are such a wonderful father.  I must be walking around feeling a little misty just under the surface, because what you wrote above brought tears to my eyes.   Even middle aged women (I'm almost 45) miss our Daddies when we're in trouble.   And sometimes the ones we miss never existed in the first place, but sound a whole lot like you.
Love,
Denise


Edited by dmwolf - Aug 09 2009 at 10:29pm
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2009 at 10:10pm
check your local ACS office and local hospitals. I know several of the hosptials in my area have offered caregiver support groups.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2009 at 6:43am
Veronica, I've been both caregiver (to both parents) and patient. A part of me wants to say that the caregiver bears the heavier load. Cancer knows no boundaries, it is a greedy beast. And as you will find, even on your strongest days, it will still challenge you and your sister.
 
As to the anger. The anger is fed by fear. Fear of the unknown is probably the most common. I found that I had to have continual talks with the professionals, asking them not to surprise me. Even simple things, like walking into the room to tell me that they had scheduled a previously unknown blood test or cat scan. It's important that you and your sister regain as much control of the scheduling as possible. Believe me, that conversation is important.
 
You are so wise to seek support groups, and you are so right that talking it over helps. I'm so glad you've come to this forum, doors open 24/7, ready and hopeful to listen.  When taking care of my mom and dad I hated the waiting rooms, when I had to be alone while tests were being run. And the magazines were awful. Try taking books on tape, a DVD player, they'll help pass the time. Come to think of it I probably could have gotten a college degree on tape if I'd tried! Hang in there, and welcome!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2009 at 5:36pm
You have gotten good advice.  Best of luck to you and your sister.
 
Love,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2009 at 6:13pm
http://www.cancercaregiving.com/Default.aspx
 
 

Maybe some of these links will help.  You've been given some good information.
 
Good luck to you and we hope to hear from you more with updates on both of you.


Edited by trip2 - Aug 10 2009 at 6:14pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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Veronica219 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Veronica219 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2009 at 5:20pm
Thank you to everyone! I have gotten great advice here. And some really great websites to check out. Steve, your post made me get goosebumps when reading it. Your daughter is really lucky to have you. I lost my dad to cancer eight years ago and miss him terribly, and it is true what dmwolf wrote, no matter how old we get we miss our dad's when we are in trouble!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2009 at 5:38pm
Steve is amazing with all of his knowledge and he loves his family sooo much!
 
Yes we do miss our fathers.  I lost mine to lung cancer.  It always seemed just hugging your dad would make things safe again.
Stage 2 2003
Stage 1 2007
BRCA 1+
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