Reach To Recovery
Comments
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I'm sure this topic has been covered here before, but I attended Reach To Recovery class last weekend. There were about 25 of us, all bc survivors of course, as it's the American Cancer Society's bc outreach organization.
It was a well-organized, fun, training session.
I haven't yet been assigned a newly diagnosed person, and just hope I am helpful when it happens!
Has anyone else here volunteered for RTR?
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I've never heard of this....is that it's intent, to match survivors with newly-diagnosed women or women in active treatment? Sounds wonderful! How did you hear about it, D?
~Marin
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I'm a RTR volunteer. I've had one 'successful' match who I only spoke to on the phone and one who I never was able to have a conversation with as she never could talk when I called her.
It's a great program but I don't feel that I've been much help as a volunteer as I've only been contacted twice in two years.
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When I had surgery last year an RTR volunteer helped me. Now that I'm through with treatment, I did the RTR training. I volunteer in a hospital, so I see patients before they go home after surgery, and I call to follow up after they're home. If they need chemo or radiation I request another volunteer with that experience to contact them for followup.
Minz
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I didn't have very good luck with my RTR lady.
She called the night before and it wasn't a good time for me, then I didn't hear from her again.
The hosptial hooked me up a nurse on the injured-reserve list that had bc and I spoke with her at my pre-admission time. That was helpful. She turned up again before my surgery and after. While it wasn't any ultra-meaningful experience I did feel like somebody cared.
At least if you get them in the hospital they don't have kids and husbands and household demands distracting them.
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I don't remember how I heard about it. I think my surgeon is who recommended me to the ACS.
Yes, ideally they match survivors with newly diagnosed, although I don't recall a RTR volunteer contacting me after diagnosis. Friends of friends who were survivors did contact me though, and I found it to be very helpful.
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The week prior to surgery, I requested RTR to come to hospital. No one came. I called again after I got home. No return call. I emailed the RTR link and two weeks after surgery received a call from the main state office. A RTR volunteer visited me a week later. Though she was very nice, we were not matched well. Different diagnosis, different treatment, 20+ year difference in age.
I learned very little from RTR and was disappointed. The program has such potential to help, esp in non-metropolitan areas where excellent medical care is more difficult to obtain or military communities where the bc patient may not have extended family or friends to assist.
I hope it works better for others in my area and I just "fell in a crack" somehow.
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I've written this on another thread but I called at least 8 times requesting a call from a RTR volunteer. One person called about 2 months later and didn't leave a return number. A supervisor called me to ask how it was going and I told her what happened. She was astounded and asked if I still wanted to hear from someone. I said that I did and no one ever called. Like many of you, I have a lot of friends but I could have used a call or a visit from someone who survived cancer. If the program is defunct or there aren't enough volunteers, it shouldn't be offered as a resource.
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Have been a Reach volunteer for 2 yrs .,and recently was made a trainer with them....It has been so rewarding and you really get to meet alot of nice women.
Please refer( or self refer yourself )any woman you know who is newly diagnosed to your A.C.S. office...you do not need to be referred by your physician....
They also offer the "Look good ,Feel better" program where they teach make up tips,scarf tricks, etc. to the newly diagnosed..and you get a lovely collection of makeup donated by major manufacturers. I was astonished by this generosity.This is often given once a month ..depending on the number requesting services.
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Terese Lasser began Reach to Recovery in 1952 due to her own breast cancer. From what I've read she was quite unhappy about the total lack of support during her mascetomy and decided to take it upon herself to visit women during their mastectomies and provide support. The surgeons hated her and often she was evicted from the hosptial, but it did not stop her!! The doctors felt that she was "interferring" with their patients.
Eventually, the American Cancer Society took it over as a national program.
As I understand it, there are rules that must be adhered to, i.e. a survivor with mastectomy must either have reconstruction or wear a prosthesis in order to be a volunteer (the BC survivor must look "normal", according to ACS.) Also, the volunteer must be at least one year cancer free. Furthermore, I believe no one at stage IV is allowed to be a volunteer. I hope some of these rules have since been relaxed.
I too called them several times before and after my mastectomy but sadly no one ever got back to me.
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I have been a reach to recovery volunteer for several months and have mixed feelings about it. Our contact is about 100% phone and feels impersonal, we aren't supposed to give out our phone number (although I usually do) for privacy reasons. I only volunteer occasionally but feel I have helped on occasion. I believe the requirements by jellydonuts are all true and wonder why stage IV people aren't allowed to volunteer. I know we don't want to discourage but what about women facing a reoccurrence? Who is there for them?
Shirley
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I too have mix feelings. I have done it for about 2 years. Most of the folks I called were stage I, and 80 years old.
Everyone I called really didn't seem to want to talk, or had all of the information they needed. I usually find that friends of friends support is better.
I am not doing it anymore. Felt my time was better spent raising money for the cause.
Just my opinion.
Janis
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I had heard about RTR years before my BC dx this January. I guess I was looking forward to being visited while in the hospital for my mast/SNB, and maybe getting the package of "goodies" I had heard about. I also heard there were RTR exercises that I would be taught, to help with improving range-of-motion after surgery.
Well, if there's an RTR program in Birmingham, AL, they're not very visible. I didn't see a soul while in the hospital at UAB. No non-family visitors, no helpful gifts, no nothing. I was hoping someone would come in and tell me about where to get fitted for a prosthesis, or where I could buy mastectomy bras, when the time came. But, no.
Ten days after my surgery, when my last drain was pulled, one of the nurses gave me a poor-quality photocopy of an old edition of the RTR exercise booklet. She said, "Here. Do these exercises. They'll help you get your range-of-motion back." That was it.
I don't know what I would say if somebody called me now, 5 weeks later. I don't need them anymore, since I found this discussion board.
otter
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Reach to Recovery worked for me...they were so nice...
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My grandmother volunteered for this group when she worked at Ravenswood Hospital. She thought it was great. One patient said to Gram, "I can tell that you've never had a sick day in your life." Gram told her about her mastectomy and said it really seemed to make a difference to the woman.
Catherine
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Perhaps RTR is quietly being phased out? It is a different world today, as opposed to 1952 when RTR was initiated. Back then women were in the hospital ten or more days for mastectomy, as opposed to our one nigh, or even worse, drive through!.
Also, the Internet has endless information along with forums such as this one. If we choose to visit a forum we're being supported by many women who are going through the same thing.
However, IMO, there is still a need for RTR for those who don't have access to the Internet and also for those who can appreciate talking in-person to someone that can shed light on the many issues we face.
In addition, many, many women continue working during/after breast cancer and maybe the number of volunteers has lessened.
Jelly
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I am grateful for my contact with RTR but I did not find out about them at the hospital. After my failed reconstruction I just happened to learn about them from my aunt who had a mastectomy about 25 years ago.
When I called my local ACS office I was told they did not come to homes in our county, but they sent me fills and a mastectomy bra and matched me with a really nice mentor.
Given the fact I just got fitted with forms yesterday, I could not have gotten through those 8 months post surgery without the things RTR provided and of course the ladies on this board. I did not have a clue what I needed because I wasn't supposed to need any of it.
D
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Back in the late 70's, I started a RTR program in my hospital. That was when women were given radical mast and in the hospital, as noted above, for many days.
It was a huge help then to have another woman to meet with and, after banging the surgeons over the head, they were all for the program and made referrals even before admission to the hospital.
We have NO cancer volunteer programs like that now, I went out of town and was left a packet with a cami and literature by Y-Me.
I wanted to do RTR, but after being on the boards and learning how few benefited from it, I decided to do my vol work here. LOL
(I can be very flexible with timeframes and such)
I'm not into raising money but when I worked with ACS, I was very active in education, counseling, and many other medical care aspects. Even getting the big city oncs to learn that protocols could be administered in small towns by good docs.
I agree that RTR is likely phasing out due to the vast amout of info available from so many other sources. And isn't it wonderful that a radical mast is no longer even considered very often!
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Jelly - you make a good point about it being a different world today in medicine (thank God!)
I do think there is still a need for outreach programs. Especially for those women who don't have access to the Internet like we do. Nothing like talking to someone who's been through what you're going through.
Iodine - you've been a great counselor here on the bc.org boards!
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My RTR experience was super, but then my RTR volunteer was my next-door neighbor, who I'd sat with through her own chemo five years before my diagnosis.
She did find it hard to deal with my cancer so close up, but she was wonderfully supportive. Of course she didn't necessarily follow all the RTR rules, for which I'm eternally grateful. For instance, her response to my announcement that, "I have breast cancer!" was a resounding (and entirely uncharacteristic), "Oh, s***!"
And before my surgery she cheerfully stripped to show me her scars (extremely reassuring!)
Also very touching to me was that one of the nurses on the floor where I spent the night after my mastectomy was a survivor, and she made it her business to leave a package on the nightstand for every woman undergoing bc surgery. It had a breast form, a small hand-sewn pillow, a pile of literature (one pamphlet on lymphedema, which I tossed aside because I just "knew" that was never going to be MY problem
), and a really beautiful enameled pink ribbon pin. I cried.
So THANKS! to all of you who reach out, in whatever way you find to do it. It really does help.
Binney
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